Our Publications
Adelphi Values has authored a wealth of publications to disseminate research from clinical outcome assessment and health economics perspectives to the wider scientific community. We have led the development of a wide range of scientific communications such as conference abstracts, posters, and presentations as well as manuscripts published in peer-reviewed journals and white papers.
Below you can access our publications database and search by therapy area and/or methodology. Please get in touch if you would like to discuss our publications in more detail.
Search our publications database
| Publication title | Authors | Journal/conference | Related link | |||
|---|---|---|---|---|---|---|
| 2024.09 | Development of a patient-reported outcomes tool to monitor changes in joint health and wellbeing for young people with haemophilia B | Bladen M, McDonagh J, Mclaughlin P, Gooding R, Holder KA, Thind S, Klooster B, Shields A, Turner-Bowker DM, Chatterton K, Leso A, Volpi C, Sivasubramaniyam S, Abulizi J, Khan N | Journal of Haemophilia Practice, 2024; 11(1): 108-122 | View Publication | Hematology | COA instrument development or modification, Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs |
| 2024.11 | Qualitative Patient Interviews in Warm Autoimmune Hemolytic Anemia: Understanding Disease Experience and the Content Validity of the Promis Fatigue Short Form 13a | Ollis S, D'Alessio D, Schulte A, Mathias SD, Love E, Banderas B, Berger S, Waris H, Murakhovskaya I | Abstract published by American Society of Hematology. Blood, 2024; 144(Supplement 1): 7708. | View Publication | Hematology, Rare diseases, Immunology | Qualitative patient-centered research and evaluation of COAs |
| 2024.11 | Mindful Measures: Assessing Content Validity of Patient-Reported Outcomes for Major Depressive Disorder in Clinical Trials | Olonilua D, Tallarico M, Voci A, Linton S, Bernstein MC, Okorie C, Walker M | Poster presented at ISPOR EU, Barcelona, Spain, 17th-20th November 2024 | View Publication | CNS/Neurology | Literature and COA instrument reviews |
| 2024.11 | Approaches to Participant Sampling in in-Trial Interviews | Dickie G, Klooster B, Galipeau N, Brova M | Poster presented at ISPOR EU, Barcelona, Spain, 17th-20th November 2024 | View Publication | Qualitative exit and in-trial interviews | |
| 2024.1 | Assessing Post-Inflammatory Pigmentation in Atopic Dermatitis: Reliability of the PDCA-Derm™ | Alexis A, Pierce E, Cohee A, Su S, Atwater AR, Rueda MJ, Montmayeur S, Klooster B, Lowe C, Silverberg J | Poster presented at Fall Clinical Dermatology Conference, 24th-27th October 2024 | Dermatology | Psychometric evaluation and statistical analysis of COAs | |
| 2024.11 | Identifying thresholds for meaningful improvements in NTDT-PRO scores to support conclusions about treatment benefit in clinical studies of patients with non-transfusion-dependent beta-thalassaemia: analysis of pooled data from a phase 2, double-blind, placebo-controlled, randomised trial | Taher AT, Musallam KM, Viprakasit V, Kattamis A, Lord-Bessen J, Yucel A, Guo S, Pelligra C, Shields AL, Shetty JK, Glassberg MB, Bueno LM, Cappellini MD | BMJ Open, 2024; 14:e085234 | View Publication | Hematology | Psychometric evaluation and statistical analysis of COAs |
| 2024.09 | Psychometric Evaluation of the Hidradenitis Suppurativa Impact Assessment (HSIA) in Adults With Moderate-to-Severe Hidradenitis Suppurativa: Data From a Randomized Phase 2 Upadacitinib Trial | Kimball AB, Papadopoulos EJ, Schlosser BJ, Nsiah I, Shields AL, Brova M, Savage LJ, Danavar A | Poster presented at European Academy of Dermatology and Venerology, September 2024 | Dermatology | Psychometric evaluation and statistical analysis of COAs | |
| 2024.09 | Psychometric Evaluation of the Hidradenitis Suppurativa Symptom Assessment (HSSA) in Patients With Moderate-to-Severe Hidradenitis Suppurativa: Data From a Randomized Phase 2 Upadacitinib Trial | Kimball AB, Papadopoulos EJ, Schlosser BJ, Nsiah I, Shields AL, Brova M, Savage LJ, Danavar A | Poster presented at European Academy of Dermatology and Venerology, September 2024 | Dermatology | Psychometric evaluation and statistical analysis of COAs | |
| 2024.08 | The clinical, economic, and humanistic burden of treatments for exocrine pancreatic insufficiency and cost-effectiveness of treatments: A systematic literature review | Chu P, Mioc J, Henry O, O’Donovan P | Medicine (2024) 103:33 | View Publication | Endocrinology/Metabolic diseases, Hepatology | Literature/landscape reviews, Treatment pathways/burden of illness |
| 2024.08 | Pozelimab for CHAPLE disease: Results from in-trial interviews and clinical outcome assessments | Litcher-Kelly L, Ozen A, Ollis S, Baris Feldman H, Yaworsky A, Medrano P, Chongsrisawa V, Brackin T, Perlee L, Walker M, Pradeep S, Lenardo MJ, Harari OA, Jalbert JJ | Orphanet Journal of Rare Diseases, 2024;19:290 | View Publication | Genetic diseases, Immunology, Pediatric care | Qualitative patient-centered research and evaluation of COAs |
| 2024.08 | Content Validity and Psychometric Evaluation of the Crohn’s Symptom Severity (CSS) Questionnaire in Patients with Moderately to Severely Active Crohn’s Disease | Louis E, Lee W, Litcher-Kelly L, Ollis S, Pranschke E, Fitzgerald K, Lacerda AP, Neimark E, Sanchez Gonzalez Y, and Panes J | Advances in Therapy, 2024 | View Publication | Gastroenterology, Immunology | Psychometric evaluation and statistical analysis of COAs |
| 2024.06 | Clinical outcome measures and biomarkers in chronic inflammatory demyelinating neuropathy (CIDP): A literature review | Rajabally Y, Boggia G, Gary C, Noel W, Riley D, Riley S, Nobile-Orazio E | Abstract presented at the European Academy of Neurology, June 2024 | CNS/Neurology | Literature/landscape reviews | |
| 2024.06 | Within-Trial Interviews to Contextualize the Patient Experience and Supplement Clinical Outcomes Assessments in a Pivotal Trial of a Newly Described, Fatal and Ultra-Rare Pediatric Disease | Litcher-Kelly L, Ozen A, Ollis S, Baris-Feldman H, Yaworsky A, Medrano P, Chongsrisawat V, Brackin T, Perlee L, Walker M, Pradeep S, Lenardo M, Harari O, Jalbert JJ | Poster presented at ISPOR, May 2024. Value in Health, 2024;27(6 Supplement):S321 | View Publication | Immunology, Pediatric care, Rare diseases | Qualitative exit and in-trial interviews |
| 2024.06 | Make Her Voice Count: Understanding the Use of Patient-Reported Outcomes in Contraceptive Trials | Rupinski K, Bernstein MC, Kumar NS, Murli N, Ollis S, Olonilua D, Tallarico M | Poster presented at ISPOR, May 2024. Value in Health, 2024;27(6 Supplement):S310 | View Publication | Women's health | Literature and COA instrument reviews |
| 2024.06 | Six-minute walk test as clinical end point in cardiomyopathy clinical trials, including ATTR-CM: A systematic literature review | Nativi-Nicolau J, Yilmaz A, Dasgupta N, Macey R, Cochrane J, Peatman J, Summers C, Luth J, Zolty R | J. Comp. Eff. Res. (2024) e230158 | Cardiovascular | Literature/landscape reviews | |
| 2024.05 | Patient Interpretations of Patient-Reported Outcome Measures to Assess Bowel Urgency: Qualitative Interviews in Ulcerative Colitis | Jairath V, Gibble TH, Moses R, Klooster B, Litcher-Kelly L, Walker M, Bernstein MC, Rupinski K, McLafferty M, Travis S, Dubinsky M | Journal of Patient-Reported Outcomes, 2024; 8: 54 | View Publication | Gastroenterology, Immunology | Qualitative patient-centered research and evaluation of COAs |
| 2024.05 | Patient experience of iptacopan in three clinical trials for paroxysmal nocturnal hemoglobinuria | de Castro C, Risitano A, Scheinberg P, Han B, Vallow S, Bermann G, Dahlke M, Kumar R, Winnette R, Yen G, Dickie G, Lamoureux R, Lowe C, Olonilua D, de Latour RP | e-Poster presented at European Hematology Association, 2024: P1918 | View Publication | Hematology | Qualitative exit and in-trial interviews |
| 2024.05 | The patient experience with warm autoimmune hemolytic anemia: A targeted literature and patient-reported outcome measure review | Love E, Bernstein M, Waris H, Banderas B, Ollis S, Dionne P, Mathias S, DAlessio D | Abstract published by European Hematology Association, 2024: PB3262 | View Publication | Hematology, Rare diseases, Immunology | Literature and COA instrument reviews |
| 2024.05 | Economic burden of itch-related sleep loss in moderate-to-severe atopic dermatitis in the United Kingdom | Pierce E, Burge R, Hirst A, Fox A, Suokas A, Yi Y | Dermatol Ther (Heidelb). 2024 May; 14(5): 1103–1114 | View Publication | Dermatology | Economic models |
| 2024.05 | Economic impact analysis of a minimally invasive temperature-controlled radiofrequency device versus nasal surgery for the treatment of nasal airway obstruction in the United States | Yong M, Hollemon D, Baxter J, Hirst A, Bryning S, Fox A, Smith G, Hughes R, Brandolini G, Wolf S, Ow R | Journal of Medical Economics, 27(1), 708–714 | View Publication | Surgery anesthesiology and wound care, Respiratory diseases | Economic models |
| 2024.05 | Clinical consensus on treatments for transplant-ineligible newly diagnosed multiple myeloma: Double-blinded Delphi panel | Fonseca R, Rossi A, Medhekar R, Voelker J, Homan T, Wilcock J, Karakusevic A, Cochrane J, Bridge D, Perry R, Kaila S, Davies F | Future Oncology, 1–12 | View Publication | Oncology | Evidence synthesis/utility generation |
| 2024.04 | Experience and burden of post-transplant cytomegalovirus infection and treatment from the patient’s perspective | Davis K, Avery RK, Power S, Litcher-Kelly L, Lowe C | Poster presented at Academy of Managed Care Pharmacy, 2024 | Infectious diseases | Qualitative patient-centered research and evaluation of COAs | |
| 2024.04 | Evaluation and modification of a shared decision-making tool for peanut allergy management | Anagnostou A, Yaworsky A, Brova M, Ibrahim N, Kakked S, Spite S, Duluc L, Shields A, Lee T, Leonard S, Przywara K, Smith A | Current Allergy and Asthma Reports, 2024 | View Publication | Allergies | Qualitative patient-centered research and evaluation of COAs |
| 2024.04 | Delphi consensus panel on assessing clinically meaningful treatment outcomes in adults living with spinal muscular atrophy (SMA) | Sully K, Chiriboga CA, Duong T, Erbas Y, Glascock J, Gusset N, Muni-Lofra R, O’Connell C, Vázquez-Costa JF, Walter MC, Guittari CJ, Cochrane J, Townson LD, Marciniak A, Riley D, Nam J | Poster presented at the American Academy of Neurology (AAN), April 2024 | Genetic diseases, Musculoskeletal diseases | Evidence synthesis/utility generation | |
| 2024.03 | Patient Perspectives of Bowel Urgency and Bowel Urgency-Related Accidents in Ulcerative Colitis and Crohn’s Disease | Jairath V, Gibble TH, Bleakman AP, Chatterton K, Medrano P, McLafferty M, Klooster B, Saxena S, Moses R | Inflammatory Bowel Diseases, 2024; izae044 | View Publication | Gastroenterology, Immunology | Qualitative patient-centered research and evaluation of COAs |
| 2024.03 | Expert panel to identify optimal standards of care and provide consensus on management best practices for patients with CTD-PAH | Del Galdo F, Coghlan G, Gaine S, Rojas Acosta C, Perry R, Bridge D, Gruenig E | Poster presented at the Systemic Sclerosis World Congress, March 2024 | Cardiovascular | Evidence synthesis/utility generation | |
| 2024.03 | Dog owners’ perceptions of the convenience and value of chewable Oclacitinib: Quantitative survey data from an international survey | Wright A, Hillier A, Lambert J, Mwacalimba K, Lloyd N, Kagiwada T, Hashiguchi Y, Hours C, Riley D, Enstone A, Wyn R | Animals 2024, 14(6), 952 | View Publication | Animal health | Evidence synthesis/utility generation |
| 2024.03 | Assessment of the comprehensiveness of paediatric national immunisation programmes in Europe: Expert validation and future perspectives | Sabale U, Murtagh J, Cochrane J, Riley D, Perry R, Heron L, Bonanni P, Navarro Alonso J, Eskola J, Laigle V | Expert Review of Vaccines, 23:1, 324-335 | View Publication | Vaccines, Pediatric care | Evidence synthesis/utility generation |
| 2024.03 | Protocol for a Delphi consensus panel on assessing clinically meaningful treatment outcomes in adults living with SMA | Sully K, Chiriboga CA, Duong T, Erbas Y, Glascock J, Gusset N, Muni-Lofra R, O’Connell C, Vázquez-Costa JF, Walter MC, Guittari CJ, Cochrane J, Townson LD, Marciniak A, Riley D, Nam J | Poster presented at the Scientific International Congress on Spinal Muscular Atrophy (SMA), March 2024 | Genetic diseases, Musculoskeletal diseases | Evidence synthesis/utility generation | |
| 2024.01 | Disutility of Cognitive Processing Speed (CPS) impairment in the context of multiple sclerosis: A time trade-off (TTO) elicitation study | Benedict R, Vo P, Adlard N, Grennan O, Enstone A, Bridge D, Wyn R, Cohan S | ClinicoEconomics and Outcomes Research 2024:16, 55-67 | View Publication | CNS/Neurology | Evidence synthesis/utility generation |
| 2024.01 | The cost of seasonal influenza: A systematic literature review on the humanistic and economic burden of influenza in older (≥ 65 years old) adults | Langer J, Welch V, Moran M, Cane A, Lopez S, Srivastava A, Enstone A, Sears A, Markus K, Heuser M, Kewley R, Whittle I | Adv Ther (2024) | View Publication | Infectious diseases | Literature/landscape reviews, Treatment pathways/burden of illness |
| 2024.01 | Definition and measurement of post-COVID-19 conditions in real-world practice: A global systematic literature review | Yang J, Markus K, Andersen K, Rudolph A, McGrath L, Nguyen J, Kyaw M, Whittle I, Blazos V, Heron L, Regazzini Spinardi J | BMJ Open 2024;14:e077886 | View Publication | Infectious diseases | Literature/landscape reviews |
| 2024 | Expert consensus on best practices for oral selexipag titration and management of expected side effects in the treatment of pulmonary arterial hypertension (PAH) | Wu S, Doad G, Benninger C, Cho M, Perry R, Bridge D, Oswald C, Val-Maranes L, Strachan P | Poster presented at ATS 2024. Am J Respir Crit Care Med 2024;209:A5430 | View Publication | Cardiovascular | Evidence synthesis/utility generation |
| 2023.12 | Global prevalence of varicella-associated complications: A systematic review and meta-analysis | Shah H, Meiwald A, Perera C, Casabona G, Richmond P, Jamet N | Infect Dis Ther 13, 79–103 (2024) | View Publication | Infectious diseases | Literature/landscape reviews |
| 2023.11 | Burden and economic impact of vaccine-preventable cancer mortality in Europe | Bencina G, Oliver E, Meiwald A, Hughes R, Sabale U, Ovcinnikova O, Morais E, Ugrekhelidze D, Weston G | Poster presented at ISPOR, November 2023 | View Publication | Oncology, Vaccines, Infectious diseases | Treatment pathways/burden of illness, Economic models |
| 2023.11 | The indirect costs and burden of vaccine preventable cancers mortality in Middle East and North Africa (MENA) countries | Bencina G, Oliver E, Meiwald A, Hughes R, Weston G, Ugrekhelidze D | Poster presented at ISPOR, November 2023 | View Publication | Oncology, Vaccines, Infectious diseases | Treatment pathways/burden of illness, Economic models |
| 2023.11 | Pieces: Productivity losses due to premature mortality from cancer in Greece | Yfantopoulos N, Skroumpelos A, Karokis A, Hughes R, Weston G, Bencina G | Poster presented at ISPOR, November 2023 | View Publication | Oncology | Treatment pathways/burden of illness, Economic models |
| 2023.11 | Cancer-related mortality in Türkiye: Years of life lost and productivity costs | Akyol Ersoy B, Karadurmus N, Incegul B, Batum M, Ozcan G, Ceylan Y, Weston G, Hughes R, Poellinger B, Bencina G, Malhan S, Cicin I | Poster presented at ISPOR, November 2023 | View Publication | Oncology | Treatment pathways/burden of illness, Economic models |
| 2023.11 | Indirect cost of HPV-attributable cancer in the United Kingdom | Engelbrecht K, Ovcinnikova O, Ntais D, Weston G, Hughes R, Bencina G | Poster presented at ISPOR, November 2023 | View Publication | Infectious diseases, Oncology | Treatment pathways/burden of illness, Economic models |
| 2023.11 | Impact of cancer deaths on years of life and productivity losses in Japan in 2019 | Aguiar-Ibáñez R, Weston G, Hughes R, Abe M, Taniguchi K, Ohno T, Bencina G | Poster presented at ISPOR, November 2023 | View Publication | Oncology | Treatment pathways/burden of illness, Economic models |
| 2023.11 | Assessing cancer-related premature mortality and productivity loss in lung, melanoma, and breast cancers in European regions: Temporal trends in 2010-2019 | Brandtmuller A, Oliver E, Weston G, Bencina G, Hughes R | Poster presented at ISPOR, November 2023 | View Publication | Oncology | Treatment pathways/burden of illness, Economic models |
| 2023.11 | Multi-comparator ICERs in cost-effectiveness analysis to account for changes in clinical practice after the introduction of a new technology | Weston G, Hughes R, Mountain G | Poster presented at ISPOR, November 2023 | View Publication | Cardiovascular | Economic models, HTA/reimbursement |
| 2023.11 | Usage of social return on investment modelling in the analysis of healthcare interventions: A review of current utilisation | Harrop D, Hirst A, Hughes R, Weston G | Poster presented at ISPOR, November 2023 | View Publication | Economic models, Literature/landscape reviews | |
| 2023.11 | Expert elicitation techniques: Informing application in HTA decision-making | Riley D, Fox A, Hirst A, Marciniak A, Heron L | Poster presented at ISPOR, November 2023 | View Publication | Evidence synthesis/utility generation, HTA/reimbursement | |
| 2023.11 | The acceptability of human papillomavirus vaccination in the United Kingdom: A review of the literature on barriers and facilitators to vaccination | Karakusevic A, Heron L, Foss A | Poster presented at ISPOR, November 2023 | View Publication | Infectious diseases, Vaccines | Literature/landscape reviews |
| 2023.11 | Presenting expected net loss curves to better communicate decision uncertainty in cost effectiveness analysis | Yi Y, Meiwald A, Hirst A, Weston G | Poster presented at ISPOR, November 2023 | View Publication | Oncology | Economic models |
| 2023.11 | Modelling visual acuity distributions to inform a simplified cost effectiveness analysis | Hirst A, Perera C, Hughes R | Poster presented at ISPOR, November 2023 | View Publication | Ophthalmology | Economic models |
| 2023.11 | Budget impact of the Jada System for the treatment of patients with abnormal post-partum bleeding or hemorrhage in the United States | Yong C, Fox A, Hirst A, Hughes R, Mountain G, Seal B, Rood KM | Poster presented at ISPOR, November 2023 | View Publication | Women's health | Economic models |
| 2023.11 | Developing an analysis to determine the value of time when delaying the WHO's seasonal influenza vaccine strain selection recommendation | Reynard C, Boikos C, Saha S, Hughes R, Brandolini G, Harrop D, Meiwald A, Maleki F, Hu T, Suphaphiphat Allen P, Weston G, Welch VL | Poster presented at ISPOR, November 2023 | View Publication | Infectious diseases, Vaccines | Literature/landscape reviews |
| 2023.11 | Clinical, economic, and patient-reported impact of obesity in the Asia-Pacific region: A systematic review | Artime E, Franceschini M, Riley S, Mount JE, Tahbaz A, Flannery C, Newson RS | Poster presented at ISPOR, November 2023 | View Publication | Endocrinology/Metabolic diseases | Literature/landscape reviews, Treatment pathways/burden of illness |
| 2023.11 | Clinical, economic, and patient-reported impact of obesity in selected European countries: A systematic review | Artime E, Rousseau B, Mount JE, Kewley R, Flannery C, Tahbaz A | Poster presented at ISPOR, November 2023 | View Publication | Endocrinology/Metabolic diseases | Literature/landscape reviews, Treatment pathways/burden of illness |
| 2023.11 | The need for novel mechanisms to tackle the global antimicrobial resistance (AMR) threat: Are innovative payment models enough? | Pan J, Franceschini M, Perry RM, Rousseau B | Poster presented at ISPOR, November 2023 | View Publication | Infectious diseases | Literature/landscape reviews |
| 2023.1 | Adapting the Urgency Numeric Rating Scale for Clinical Practice: Content Validity and Patient Interpretation | Dubinsky MC, Gibble TH, Moses RE, Klooster B, Bernstein MC, Walker M, Rupinski K, Litcher-Kelly L, Kayhan C, Travis S | Poster presented at American College of Gastroenterology, October 2023 | View Publication | Gastroenterology, Immunology | Qualitative patient-centered research and evaluation of COAs |
| 2023.09 | A data-driven disease burden model based on molecular classification in endometrial cancer patients in five European countries and the United States | Li Y, Perera C, Chen L, Mistry R, Young K, Hughes R, Weston G, Lichfield J, Marth C | Poster presented at the European Society of Gynaecological Oncology, September 2023 | Oncology, Women's health | Economic models, Treatment pathways/burden of illness | |
| 2023.09 | Clinical consensus on first-line treatments for transplant-ineligible patients with newly diagnosed multiple myeloma: Delphi panel of US Hematologists and Oncologists | Fonseca R, Rossi A, Voelker J, Homan T, Kaila S, Medhekar R, Wilcock J, Karakusevic A, Cochrane J, Bridge D, Perry R, Davies F | Poster presented at International Myeloma Society (IMS) 2023 | View Publication | Oncology | Treatment pathways/burden of illness, Evidence synthesis/utility generation |
| 2023.09 | Musculoskeletal manifestations associated with transthyretin-mediated (ATTR) amyloidosis: A systematic review | Aldinc E, Campbell C, Gustafsson F, Beveridge A, Macey R, Marr L, Summers C, Zhang D | BMC Musculoskeletal Disorders 2023 24:751 | View Publication | Rare diseases, Musculoskeletal diseases | Literature/landscape reviews |
| 2023.08 | Do physical attributes of topical formulations impact how cat owners choose antiparasitic treatments? | Wright A, Mwacalimba K, Valiakos G, Matsumoto S, Onai Y, Riley D, Enstone A | Presented at World Association for the Advancement of Veterinary Parasitology, 2023 | Animal health | Treatment pathways/burden of illness | |
| 2023.07 | Economic and humanistic burden of HPV-related disease in Indonesia: A qualitative analysis | Felsher M, Setiawan D, Varga S, Perry R, Riley D, Newman R, Beveridge A, Oswald C, Kothari S, Sukarom I, Postma M | Global Public Health, 18:1 | View Publication | Infectious diseases, Oncology | Treatment pathways/burden of illness, Evidence synthesis/utility generation |
| 2023.07 | Understanding the global burden of influenza in adults aged 18–64 years: A systematic literature review from 2012 to 2022 | Maleki F, Welch V, Lopez S, Cane A, Langer J, Enstone A, Markus K, Wright O, Hewitt N, Whittle I | Adv Ther (2023) | View Publication | Infectious diseases | Literature/landscape reviews, Treatment pathways/burden of illness |
| 2023.07 | Indirect costs due to lung cancer-related premature mortality in four European countries | Bencina G, Chami N, Hughes R, Weston G, Baxter C, Salomonsson S, Demedts I | Adv Ther. 2023 Jul;40(7):3056-3069 | View Publication | Oncology | Evidence synthesis/utility generation, Economic models |
| 2023.06 | How topical formulation physical attributes impact cat owner preference for antiparasitic treatments: Qualitative validation of a discrete choice experiment | Mwacalimba K, Wight A, Valiakos G, Riley D, Enstone A | Presented at American Association of Veterinary Parasitologists 2023 | Animal health | Treatment pathways/burden of illness | |
| 2023.06 | Development of Guidelines on Defining and Monitoring Progression of ATTRv Amyloidosis Using the Delphi Technique | Waddington-Cruz M, Slama MS, Ueda M, Peltier A, Knebel F, Drachman B, Coelho T, Jones A, Middlehurst J, Williamson N, Adams D | Oral Presentation at Peripheral Nerve Society Meeting, June 2023 | Rare diseases | Qualitative patient-centered research and evaluation of COAs | |
| 2023.06 | Perceptions of Treatment Outcomes in People with Obesity and T2D - A Qualitative Study | Poon JL, O'Hara L, Kendal H, Sully K, Guy M, Bradley H, Tolley C, Mason B | Diabetes vol 72,Supp 1,1709P, June 2023 | View Publication | Endocrinology/Metabolic diseases | Qualitative patient-centered research and evaluation of COAs |
| 2023.06 | Qualitative interviews to assess the impact of chronic hepatitis delta virus infection on health-related quality of life in untreated patients from the US, Italy, Spain, and Germany | Lampertico P, Gish R, Reau N, Wedemeyer H, Buti M, Kaushik A, Elwick H, Williamson N, Chohan A, Guy M, Jones R, Yehoshua A | Poster presented at EASL Congress, June 2023 | Infectious diseases | Qualitative patient-centered research and evaluation of COAs | |
| 2023.05 | Global burden and economic impact of vaccine-preventable cancer mortality | Bencina G, Oliver E, Meiwald A, Hughes R, Morais E, Schillinger J, Weston G | Journal of Clinical Oncology 41, no. 16_suppl (June 01, 2023) 10542-10542 | View Publication | Oncology, Vaccines, Infectious diseases | Treatment pathways/burden of illness, Economic models |
| 2023.05 | Designing Fit-for-Purpose Patient Preference Studies - a COA Developer Perspective | Mason B, Gater A | Poster presented at ISPOR, May 2023. Value in Health, 2023;26(6):S348 | View Publication | Patient preference research | |
| 2023.05 | Quantifying Patient Preferences for Targeted Therapies in Metastatic Melanoma: A Discrete-Choice Experiment | Mason B, Mesana L, Hallworth P, di Pietro A, Randhawa S, Rezai N, Hughes O, Guenzel C, Gater A, Chen K, Clifford M, Hauber B, Marin L, Cappalleri JC | Poster presented at ISPOR, May 2023. Value in Health, 2023;26(6):S333 | View Publication | Oncology | Patient preference research |
| 2023.05 | The impacts of age and gender on mapped EQ-5D-5L utilities and quality-adjusted life years (QALYs) in cancer clinical trials | Shaw JW, Bennett B, Russell J, van Hout B, Norman R, Frampton K, Moreno-Koehler A, Taylor F, Cocks K | Poster presented at ISPOR, May 2023. Value in Health, 2023;26(6): S334. | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2023.05 | In-trial interview sample size: A review of the published literature | Galipeau N, Ollis S, McLafferty M, Love E, Litcher-Kelly L | Poster presented at ISPOR, May 2023. Value in Health, 2023;26(6): S339. | View Publication | Literature and COA instrument reviews, Qualitative exit and in-trial interviews | |
| 2023.05 | Patient-Reported Outcomes in Opioid Use Disorder (PR-OUD): Recommendations and Barriers in Clinical Trials and Studies | Ibrahim N, Walker M, Waris H, Litcher-Kelly L | Abstract accepted ISPOR. Value in Health, 2023;26(6): S315. | View Publication | Addiction | Literature and COA instrument reviews |
| 2023.05 | Evaluating the patient experience with CD55 deficiency with hyperactivation of complement, angiopathic thrombosis, and protein-losing enteropathy (CHAPLE) disease: A deadly ultra-rare pediatric disease | Litcher-Kelly L, Ollis S, Yaworsky A, Baris Feldman H, Harari O, Ozen A, Jalbert J | Abstract accepted at ISPOR. Value in Health, 2023;26(6): S11. | View Publication | Genetic diseases, Immunology, Pediatric care | Qualitative patient-centered research and evaluation of COAs |
| 2023.02 | Patient Perspective of Bowel Urgency and Bowel Urgency-Related Accidents in Crohn's Disease | Jairath V, Hunter T, Moses R, Bleakman AP, Chatterton K, Medrano P, Hoffman R, Walker M, McLafferty M, Klooster B, Delbecque L | Inflammatory Bowel Diseases, 2023; 29(Supplement 1): S68 | View Publication | Gastroenterology, Immunology | Qualitative patient-centered research and evaluation of COAs |
| 2023.02 | Patient Perspectives of Bowel Urgency and Bowel Urgency-Related Accidents in Ulcerative Colitis | Jairath V, Hunter T, Moses R, Bleakman AP, Chatterton K, Medrano P, Hoffman R, Walker M, McLafferty M, Klooster B, Delbecque L | Inflammatory Bowel Diseases, 2023; 29(Supplement 1): S68-S69 | View Publication | Gastroenterology, Immunology | Qualitative patient-centered research and evaluation of COAs |
| 2023.01 | Impact of the COVID-19 Pandemic on HPV Vaccinations in Switzerland and Greece: Road to Recovery | Gountas I, Favre-Bulle A, Saxena K, Wilcock J, Collings H, Salomonsson S, Skroumpelos A, Sabale U | Vaccines 2023, 11(2), 258 | View Publication | Infectious diseases, Vaccines | Treatment pathways/burden of illness, Economic models |
| 2023.01 | Elicitation of health state utility values in retinitis pigmentosa by time trade-off in the United Kingdom | O'Brien P, Enstone A, Bridge D, Wyn R, Banhazi J | Clinicoecon Outcomes Res. 2023 Jan 15:15:29-39 | View Publication | Ophthalmology, Genetic diseases | Evidence synthesis/utility generation |
| 2023.01 | Understanding the barriers and attitudes toward influenza vaccine uptake in the adult general population: A rapid review | Welch V, Metcalf T, Macey R, Markus K, Sears A, Enstone A, Langer J, Srivastava A, Cane A, Wiemken T | Vaccines 2023, 11(1), 180 | View Publication | Infectious diseases, Vaccines | Literature/landscape reviews |
| 2023.01 | Breast cancer-related mortality in Central and Eastern Europe: Years of life lost and productivity costs | Bencina G, Chami N, Hughes R, Weston G, Baxter C, Maciejczyk A, Popovic L, Karamousouli E, Salomonsson S | J Med Econ. 2023 Jan-Dec;26(1):254-261 | View Publication | Oncology | Evidence synthesis/utility generation, Economic models |
| 2023 | High clinical burden of influenza disease in adults aged ≥65 years: Can we do better? A systematic literature review | Langer J, Moran M, Cane A, Lopez S, Srivastava A, Enstone A, Sears A, Markus K, Heuser M, Kewley R, Whittle I | Advances in Therapy vol.40, 1601–1627 (2023) | View Publication | Infectious diseases | Literature/landscape reviews |
| 2023 | Expert consensus on real-world use and consumption patterns of a fixed-dose combination foam for psoriasis as a Reactive Management (RM) and Proactive Management (PAM) Regimen | Perry R, Beveridge A, Sears A, Rasmussen E | Advances in Therapy 40, 1062–1073 (2023) | View Publication | Dermatology, Immunology | Evidence synthesis/utility generation |
| 2023 | Impact of elotuzumab plus pomalidomide/dexamethasone on health-related quality of life for patients with relapsed/refractory multiple myeloma: final data from the Phase 2 ELOQUENT-3 trial | Weisel K, Dimopoulos MA, Miguel JS, Paner A, Engelhardt M, Taylor F, Lord-Bessen J, Yip C, Greenwood M, Tang J, Cavo M | HemaSphere, 2023;7(3):e843 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2023 | First-line nivolumab plus ipilimumab with two cycles of chemotherapy versus chemotherapy alone (four cycles) in metastatic non-small cell lung cancer: CheckMate 9LA 2-year patient-reported outcomes | Reck M, Ciuleanu T, Cobo M, Schenker M, Zurawski B, Menezes J, Richardet E, Bennouna J, Felip E, Juan-Vidal O, Alexandru A, Cheng Y, Sakai H, Paz-Ares L, Lu S, John T, Sun X, Moisei A, Taylor F, Lawrance R, Zhang X, Sylvester J, Yuan Y, Blum SI, Penrod JR, Carbone DP | European Journal of Cancer, 2023;183:174-187 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2023 | Psychometric evaluation of the Indolent Systemic Mastocytosis Symptom Assessment Form (ISM-SAF©) and determination of a threshold score for moderate symptoms | Shields AL, Taylor F, Lamoureux RE, Padilla B, Severson K, Green T, Boral A, Akin C, Siebenhaar F, Mar B | Orphanet Journal of Rare Diseases, 2023;18:69, https://doi.org/10.1186/s13023-023-02661-1 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2023 | Healthcare resource utilization of maribavir versus investigator-assigned therapy in transplant recipients with cytomegalovirus infection refractory (with or without genotypic resistance) to prior treatment: Exploratory analysis of the Phase 3 SOLSTICE trial | Hirji I, Cocks K, Moreno-Koehler A, Sen R, Sundberg A | Transplant Infectious Disease, 2023;25(3):e14064 | View Publication | Infectious diseases | Psychometric evaluation and statistical analysis of COAs |
| 2023 | Content validity of the European Organisation for Research and Treatment of Cancer Quality of Life questionnaire QLQ-C30 for use in cancer | Cocks K, Wells JR, Johnson C, Schmidt H, Koller M, Oerlemans S, Velikova G, Pinto M, Tomoaszewski KA, Aaronson NK, Exall E, Finbow C, Fitzsimmons D, Grant L, Groenvold M, Tolley C, Wwheelwright S, Bottomley A | European Journal of Cancer, 2023;178:128-138 | View Publication | Oncology | Qualitative patient-centered research and evaluation of COAs |
| 2023 | Development and testing of an alternative responder definition for EULAR Sjögren's Syndrome Patient Reported Index (ESSPRI) | Wratten S, Abetz-Webb L, Arenson E, Griffiths P, Bowman S, Hueber W, Ndife B, Kuessner D, Goswami P | RMD Open, 2023;9(1):e002721 | View Publication | Immunology | Psychometric evaluation and statistical analysis of COAs |
| 2023 | Qualitative exploration of the visual function impairments and health-related quality of life impacts of amblyopia in adult and pediatric populations | Randhawa S, Griffiths N, O’Brien P, Panter C, Boparai K, Harrad R, Khuddus N, Webber A, Bouchet C, Felizzi F | Ophthalmolgy and Therapy, 2023; https://doi.org/10.1007/s40123-023-00751-8 | View Publication | Ophthalmology, Pediatric care | Qualitative patient-centered research and evaluation of COAs, Literature and COA instrument reviews |
| 2023 | Development and content validity assessment of the Dry Eye Disease Questionnaire in patients with Dry eye disease, Meibomian gland dysfunction, and Sjögren’s syndrome dry eye disease | Sloesen B, Young A, Forde K, Hodson N, Bentley S, Walsh O, Naujoks C, O'Brien P, Sharma G | Journal of Patient Reported Outcomes, 2023;64:https://doi.org/10.1186/s41687-023-00608-5 | View Publication | Ophthalmology | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2023 | Psychometric validation and testing of the 10-item pediatric daily chest-related electronic patient reported outcome (ePRO) diary | Arbuckle R, Shea T, Marshall C, Trigg A, Stein J, Albrecht HH | Journal of Patient Reported Outcomes, 2023;6:https://doi.org/10.1186/s41687-023-00546-2 | View Publication | Respiratory diseases, Pediatric care | Psychometric evaluation and statistical analysis of COAs |
| 2023 | The Amblyopia Quality of Life (AmbQoL): Development and content validation of a novel health-related quality of life instrument for use in adult and pediatric amblyopia populations | Webber A, Randhawa S, Felizzi F, Soos M, Arbuckle R, O'Brien P, Harrad R, Khuddus N, Bouchet C, Panter C | Ophthalmolgy and Therapy, 2023;12:1281-1313 | View Publication | Ophthalmology, Pediatric care | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Literature and COA instrument reviews |
| 2023 | Individual Differences in the Patient Experience of Relapsing Multiple Sclerosis (RMS): A Multi-Country Qualitative Exploration of Drivers of Treatment Preferences Among People Living with RMS | Tatlock S, Sully K, Batish A, Finbow C, Neill W, Lines C, Brennan R, Adlard R, Backhouse T | The Patient, 2023;16:345-357 | View Publication | CNS/Neurology | Qualitative patient-centered research and evaluation of COAs |
| 2023 | Use of the European Organisation for Research and Treatment of Cancer Multiple Myeloma Module EORTC QLQ-MY20): A Review of the Literature 25 Years After Development | Forde K, Cocks K, Wells JR, McMillan I, EORTC Quality of Life Group | Blood Cancer Journal, 2023;13(1):79 | View Publication | Oncology | Literature and COA instrument reviews |
| 2023 | Health related quality of life of patients with resistant/intolerant chronic phase chronic myeloid leukaemia treated with asciminib or bosutinib in the phase 3 ASCEMBL trial | Rea D, Boquimpani C, Mauro MJ, Minimai Y, Allepuz A, Maheshwari VK, D[Alessio D, Wu Y, Lawrance R, Narbutas S, Sharf G, Hochhaus | Leukaemia, 2023;37:1060-1067 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2023 | Psychometric Validation of the ViSIO-PRO and ViSIO-ObsRO in Retinitis Pigmentosa and Leber Congenital Amaurosis | Fischer MD, Patalano F, Naujoks C, Banhazi J, Bouchet C, O'Brien P, Kay C, Green J, Durham T, Bradley H, Williamson N, Barclay M, Sims J, Audo I | Ophthalmolgy and Therapy, 2023;12:1359-1386 | View Publication | Ophthalmology | Psychometric evaluation and statistical analysis of COAs |
| 2022.12 | Lost productivity due to head and neck cancer mortality in Hungary, Poland, and Romania | Bencina G, Chami N, Hughes R, Weston G, Golusiński PJ | Journal of Cancer Policy vol. 4, Dec 2022, 100366 | View Publication | Oncology | Evidence synthesis/utility generation, Economic models |
| 2022.11 | Real-world assessment of orphan drugs via the new Joint Clinical Assessment route in Europe | Franceschini M, Heuser M, Cochrane J, O’Donovan P, Perry R | Poster presented at ISPOR, November 2022. Value in Health vol. 25,12,S312 | View Publication | Rare diseases | Literature/landscape reviews, HTA/reimbursement, Evidence synthesis/utility generation |
| 2022.11 | The impact of COVID-19 pandemic on paediatric vaccination coverage rates | Collings H, Karakusevic A, Newman R | Poster presented at ISPOR, November 2022. Value in Health vol. 25,12,S195 | View Publication | Infectious diseases, Vaccines, Pediatric care | Evidence synthesis/utility generation |
| 2022.11 | Cost-effectiveness of earlier whole-genome sequencing in rare genetic childhood epilepsy | Suokas A, Yi Y, Hirst A | Poster presented at ISPOR, November 2022. Value in Health vol. 25,12,S68 | View Publication | CNS/Neurology, Genetic diseases, Rare diseases, Pediatric care | Economic models |
| 2022.11 | Health Impact Projection of Anti-PD-(L)1 inhibitors in 13 cancer indications in France | Hughes R, Mountain G, Beyer A, Aguiar-Ibáñez R, Chaker O, Tourret M, Paoli L, Bensimon L | Poster presented at ISPOR, November 2022. Value in Health vol. 25,12,S160 | View Publication | Oncology | Economic models, Evidence synthesis/utility generation |
| 2022.11 | Assessing the impact of Anti-PD-(L)1 inhibitors on cancer care health and budget in Greece | Ktena D, Dalakaki E, Dimitriadis I, Mountain G, Hughes R, Clarke-Melville S, Roediger A, Naoum P, Athanasakis K | Poster presented at ISPOR, November 2022. Value in Health vol. 25,12,S267 | View Publication | Oncology | Economic models, Evidence synthesis/utility generation |
| 2022.11 | Use of general population utilities in NICE: Highly specialised technology appraisals of treatments with the potential to restore normal physiology | Johnson B, Cochrane J, Mountain G, Franceschini M, Weston G | Poster presented at ISPOR, November 2022. Value in Health vol. 25,12,S313-314 | View Publication | Rare diseases | Evidence synthesis/utility generation |
| 2022.11 | Economic and humanistic burden of visual impairment and blindness in Brazil: A grey literature review | Forestiero F, O'Brien P, Lavelle P, Perry RM, Banhazi J | Poster presented at ISPOR, November 2022. Value in Health vol. 25,12,S149 | View Publication | Ophthalmology | Literature/landscape reviews |
| 2022.11 | Digital health interventions: A review of economic evaluation guidelines from health technology assessment agencies | Zhou A, Yi Y | Poster presented at ISPOR, November 2022. Value in Health vol. 25,12,S301-302 | View Publication | HTA/reimbursement | |
| 2022.11 | Inclusion of environmental sustainability in the economic analysis of healthcare interventions: A review of policy approaches | Hughes R, Hirst A, Brandolini G | Poster presented at ISPOR, November 2022. Value in Health vol. 25,12,S179 | View Publication | Access/HEOR consultancy | |
| 2022.11 | Appraisal of the multi-criteria decision analysis method to improve value assessment of new therapies | Riley D, Wyn R, Fox A, Wilcock J, Heron L | Poster presented at ISPOR, November 2022. Value in Health vol. 25,12,S73 | View Publication | Literature/landscape reviews, HTA/reimbursement, Evidence synthesis/utility generation | |
| 2022.11 | Assessing impact of kidney cancer-related premature mortality and productivity loss in Greece and Portugal | Bencina G, Chami N, Hughes R, Weston G, Baxter C, Salomonsson S | Poster presented at ISPOR, November 2022. Value in Health vol. 25,12,S122 | View Publication | Oncology, Nephrology | Evidence synthesis/utility generation |
| 2022.11 | Triple negative breast cancer-related mortality in Central and Eastern Europe: Years of life lost and productivity costs | Bencina G, Chami N, Hughes R, Weston G, Baxter C, Karamousouli E, Salomonsson S | Poster presented at ISPOR, November 2022. Value in Health vol. 25,12,S153 | View Publication | Oncology | Evidence synthesis/utility generation |
| 2022.11 | The economic impact of diabetic ketoacidosis (DKA) in people with T1DM at high risk for DKA: A structured literature review | Rousseau B, Varughese B, Lavelle P, Bhaila R | Poster presented at ISPOR, November 2022. Value in Health vol. 25,12,S225 | View Publication | Endocrinology/Metabolic diseases, Immunology | Literature/landscape reviews |
| 2022.11 | Understanding the prevalence and burden of diabetic ketoacidosis (DKA) in people with T1DM at high risk for DKA: A structured literature review | Rousseau B, Varughese B, Oliver L, Bhaila R | Poster presented at ISPOR, November 2022. Value in Health vol. 25,12,S217 | View Publication | Endocrinology/Metabolic diseases, Immunology | Literature/landscape reviews |
| 2022.11 | From 'Being alive' to 'living': why the PRO data matters? | Thackray R, Joshi N | Poster presented at PHUSE-EU Connect, November 2022 | Psychometric evaluation and statistical analysis of COAs | ||
| 2022.11 | Dengue Virus Daily Diary (DENV-DD) - A new patient-reported outcome (PRO) tool measuring dengue symptom intensity: findings from a DEN-3 human challenge study | Marks MA, Jones A; White F; Kendal H; Smith V; Wells JR; Panter C, Coller B-A, O’Hagan JJ, Jarman R, Koren M, Ware L, Saretsky TL, Thomas SJ | Poster presented at American Society of Tropical Medicine and Hygiene Conference, November 2022 | Infectious diseases | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs | |
| 2022.11 | Qualitative research to understand the lived experience of patients with Dry Eye Disease (DED), Meibomian Gland Dysfunction (MGD), and Sjogren’s Syndrome Dry Eye Disease (SS-DED) | Sloesen B, Young A, Tinsley K, Sharp R, Walsh O, Naujoks C, Sharma G, O'Brien P, Bentley S | Poster presented at ISPOR, November 2022. Value in Health, 2022;25(12):S407-S408 | View Publication | Ophthalmology | Qualitative patient-centered research and evaluation of COAs |
| 2022.11 | Content validity assessment of a newly-developed patient-reported outcome (PRO) measure for Dry Eye Disease (DED), Meibomian Gland Dysfunction (MGD), and Sjogren’s Syndrome Dry Eye Disease (SS-DED) | Sloesen B, Young A, Hodson N, Smith V, Walsh O, Naujoks C, Sharma G, O'BrienP, Arbuckle R | Poster presented at ISPOR, November 2022. Value in Health, 2022;25(12):S394-S385 | View Publication | Ophthalmology | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2022.11 | Modelling time-to-death utilities as a continuous function, using a rich dataset of patients with non-small cell lung cancer | Hatswell AJ, Chaudhary MA, Moreno-Koehler A, Shaw JW, Penrod JR, Lawrance R | Poster presented at ISPOR, November 2022. Value in Health, 2022;25(12):S420 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2022.11 | Racial and Ethnic Minority Inclusion in Clinical Outcome Assessment (COA) Research: A Reflection on Current Practices | Su S, Jones A, Walker M, Nieves A, Waris H, Klooster B | Poster presented at ISPOR, November 2022. Value in Health, 2022;25(12):S388 | View Publication | Literature and COA instrument reviews | |
| 2022.11 | Qualitative Approaches Using Global Assessments to Support Meaningful Within-person Change (MWPC) Estimates for Patient-reported Outcome (PRO) Questionnaires in Regulated Clinical Trials | Ollis S, Galipeau N, McLafferty M, Su S, Litcher-Kelly L | Poster presented at ISPOR, November 2022. Value in Health, 2022;25(12): S417. | View Publication | Qualitative patient-centered research and evaluation of COAs | |
| 2022.11 | Who We Are Matters: Inclusive Demographic Data Collection in Patient-Centered Outcomes Research | Rupinski K, Berger S, Klooster B, Moreno-Koehler A, Ibrahim N, Dickie G | Poster presented at ISPOR, November 2022. Value in Health, 2022;25(12): S413. | View Publication | Literature and COA instrument reviews | |
| 2022.1 | Treatment failure and transition to next-line therapy in myelofibrosis: A modified Delphi panel approach | Mascarenhas J, Nguyen H, Saunders A, Oliver L, Tomkinson H, Perry R, McBride A | Clinical Lymphoma Myeloma and Leukemia, Vol 22, Suppl 2, October 2022, S323 | View Publication | Oncology | Evidence synthesis/utility generation |
| 2022.1 | Qualitative in-trial or exit interview methods to elicit supplementary patient experience data during clinical studies | Williamson N, Burrows K, Bonner N | Workshop presented at ISOQOL, October 2022 | Qualitative exit and in-trial interviews | ||
| 2022.1 | The experience of vasomotor symptoms in postmenopause: development of a conceptual model and review of existing patient-reported outcome (PRO) measures | Bradley H, Mason B, Barclay M, Gater A, Tolley C, Haberland C | Poster presented at ISOQOL, October 2022 | Women's health | COA instrument development or modification, Literature and COA instrument reviews | |
| 2022.1 | The Amblyopia Quality of Life (AmbQoL): Development and content validation of a novel Clinical Outcome Assessment (COA) instrument for use in adult and pediatric amblyopia populations | Randhawa S, Cooper C, Griffiths N, Soos M, Panter C, Arbuckle A, Harrad R, Khuddus N, Webber A, Bouchet C, O'Brien P, Felizzi F | Oral presentation at ISOQOL, October 2022 | View Publication | Ophthalmology, Pediatric care | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Literature and COA instrument reviews |
| 2022.1 | Psychometric Validation of the Severity of Chronic Cough Diary, Leicester Cough Questionnaire, and a Visual Analogue Scale in Patients with Chronic Cough | Gater A, Clarke N, Trigg A, Haberland C | Oral presented at ISOQOL, October 2022 | Respiratory diseases | Psychometric evaluation and statistical analysis of COAs | |
| 2022.1 | Patient-reported outcomes in clinical trials – what questions are we asking and how do we understand the results; how the estimand framework with sensitivity analyses can help: A 2-Part Series | Floden, Coens C, Lawrance R | Workshop presented at ISOQOL, October 2022 | Psychometric evaluation and statistical analysis of COAs | ||
| 2022.1 | Evaluation of patient-centered research methods: Development and validation of the participant feedback questionnaire (PFQ) | Jones A, Barclay M, Morgan L, Francis A, Trennery C, Randhawa S, O'Hara L, Panter C, Williamson N, Williams-Hall R, Gater A | Poster presented at ISOQOL, October 2022 | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification | ||
| 2022.09 | Treatment failure and transition to next-line therapy in myelofibrosis: A modified Delphi panel approach | Mascarenhas J, Nguyen H, Saunders A, Oliver L, Tomkinson H, Perry R, McBride A | Poster presented at the Society of Hematologic Oncology (SOHO) congress, September 2022 | Oncology | Evidence synthesis/utility generation | |
| 2022.09 | Indirect costs due to lung cancer-related premature mortality in four European countries | Bencina G, Chami N, Hughes R, Weston G, Baxter C, Salomonsson S, Demedts I | Poster presented at ESMO, September 2022 | View Publication | Oncology | Evidence synthesis/utility generation, Economic models |
| 2022.09 | Nivolumab plus platinum-doublet chemotherapy versus chemotherapy as neoadjuvant treatment for resectable non-small cell lung cancer: health-related quality of life outcomes from CheckMate 816 | Felip E, Wang C, Ciuleanu TE, Saylors G, Tanaka F, Chen KN, Ito H, Girard N, Lu S, Provencio M, Mitsudomi T, Awad MM, Forde P, Lawrance R, Taylor F, Worthy G, Blum SI, Vo L, Cai J, Spicer J | Oral presentation at ESMO, September 2022; Annals of Oncology, 2022;33(Supp 7): S973-S974. | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2022.09 | Exploring the patient experience of Amblypopia via a qualitative literature review and patient, caregiver and clinician interviews | Randhawa S, Griffiths N, Panter C, Harrad R, Khuddus N, Webber A, Bouchet C, O'Brien P, Felizzi F | Poster presented at World Ophthalmology Congress, September 2022 | Ophthalmology | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs | |
| 2022.09 | 932MO Nivolumab (NIVO) plus platinum-doublet chemotherapy (chemo) versus chemo as neoadjuvant treatment for resectable non-small cell lung cancer (NSCLC): Health-related quality of life (HRQoL) outcomes from CheckMate 816 | Felip E, Wang C, Ciuleanu TE, Saylors G, Tanaka F, Chen KN, Ito H, Girard N, Lu S, Provencio M, Mitsudomi T, Awad MM, Forde P, Lawrance R, Taylor F, Worthy G, Blum SI, Vo L, Cai J, Spicer J | Oral presentation at ESMO, September 2022. Annals of Oncology, 2022;33(Supp 7):S973-S974 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2022.08 | Unmet needs in the management of immune-mediated thrombotic thrombocytopenic purpura and the potential role of caplacizumab in the UK—A modified-Delphi study | Scully M, Dutt T, Lester W, Farrington E, Lockwood S, Perry R, Holmes S | eJHaem vol. 3,3,619-627, August 2022 | View Publication | Hematology, Rare diseases | Evidence synthesis/utility generation |
| 2022.07 | The burden of rotavirus-associated acute gastroenteritis in the elderly: Assessment of the epidemiology in the context of universal childhood vaccination programs | Karakusevic A, Devaney P, Enstone A, Kanibir N, Hartwig S, Carias C | Expert review of Vaccines 2022. Jul;21(7):929-940 | View Publication | Gastroenterology, Infectious diseases | Literature/landscape reviews, Treatment pathways/burden of illness |
| 2022.06 | Strengths and limitations of migraine management guidelines in the USA and Europe: A targeted literature review | Perry R, Mills K, Ford J, McCosh Z | Poster presented at HTAi, June 2022 | View Publication | CNS/Neurology | Literature/landscape reviews |
| 2022.06 | Clinical consensus regarding the importance of rapid reduction in depressive symptoms in major depressive disorder with acute suicidal ideation or behavior (MDSI) | Borentain S, Nash A, Daly E, Joshi K, O’Hara M, Zhang Q, Mathews M, Haughey S, Richards S, Anjo J, Zante D, Perry R | Presented at European Psychiatric Association, June 2022 | View Publication | CNS/Neurology | Evidence synthesis/utility generation |
| 2022.06 | Burden associated with Fabry disease and its treatment in 12- to 15-year-olds: Results from an international survey | McCaughey G, MacCulloch A, Bashorum L, Evans O, Humphries A, Perry R | Poster presented at the RCPCH conference, June 2022 | View Publication | Genetic diseases, Rare diseases | Treatment pathways/burden of illness |
| 2022.06 | Estimands in oncology: answers to old questions using the estimand framework | Englert S, Sailer O, Lawrence R, Bornkamp B | Presented at PSI Web, June 2022 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2022.06 | Japanese and French translation and linguistic validation of a patient-reported outcome tool to asssess quality of life in patients with Immune Thrombocytopenia (ITP): the ITP Life Quality Index (ILQI) | Tomiyama Y, Cheze S, Grant L, Bonner N, Affinito S, Nagano M, Rajput T, Viana R | International Journal of Hematology, 116:500-527 | View Publication | Hematology | COA instrument development or modification |
| 2022.05 | Using multi-state modelling for health economic evaluations | Yi Y, Hirst A | Poster presented at ISPOR, May 2022. Value in Health vol. 25,7,S353 | View Publication | Oncology | HTA/reimbursement, Evidence synthesis/utility generation |
| 2022.05 | The impact of informal caregiving in Alzheimer’s disease dementia: A health utility study in the United Kingdom | Belger M, Dell’Agnello G, Enstone A, Wyn R, Tockhorn-Heidenreich A | Poster presented at ISPOR, May 2022. Value in Health vol. 25,7,S545 | View Publication | CNS/Neurology | Evidence synthesis/utility generation |
| 2022.05 | Assessing the utility associated with caregiving in Alzheimer's disease (AD) with mild cognitive impairment (MCI) and AD dementia in Japan | Belger M, Dell’Agnello G, Ueda K, Enstone A, Wyn R, Tockhorn-Heidenreich A | Poster presented at ISPOR, May 2022. Value in Health vol. 25,7,S551-552 | View Publication | CNS/Neurology | Evidence synthesis/utility generation |
| 2022.05 | Bridging and validation of a thyroid eye disease (TED) specific quality of life (QOL) questionnaire to utility values assessed by a time trade-off (TTO) analysis | Holt RJ, Taylor S, Barretto N, Hirst A, Oliver L, Brandolini G, Brazier JE | Poster presented at ISPOR, May 2022. Value in Health vol. 25,7,S531 | View Publication | Ophthalmology, Immunology | Evidence synthesis/utility generation |
| 2022.05 | PCR101 Item Response Theory Analysis of the Ilqi | Griffiths P, Grant L, Arenson E, Maheshwari VK, Viana R | Poster presented at ISPOR, May 2022. Value in Health; 2022;25(7):S560 | View Publication | Hematology | Psychometric evaluation and statistical analysis of COAs |
| 2022.05 | PCR14 Development and Content Evaluation of a Novel Osteoporotic Vertebral Fracture Patient-Reported Outcome Questionnaire | Yeh E, Su S, Banderas B, Chatterton K, Dickie G | Poster presented at ISPOR, May 2022. Value in Health, 2022;25(7): S543. | View Publication | Musculoskeletal diseases | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2022.04 | Assessing the impact of kidney cancer-related premature mortality and productivity loss in Greece and Portugal | Bencina G, Chami N, Hughes R, Weston G, Baxter C, Salomonsson S | Expert Rev Pharmacoecon Outcomes Res. 2023 Apr;23(4):391-398 | View Publication | Oncology, Nephrology | Evidence synthesis/utility generation |
| 2022.04 | Economic and humanistic burden of HPV-related disease in Indonesia: A qualitative analysis | Felsher M, Setiawan D, Varga S, Della Pia R, Riley D, Newman R, Beveridge A, Oswald C, Kothari S, Postma M | Presentation at EUROGIN, April 2022 | Infectious diseases | Literature/landscape reviews, Treatment pathways/burden of illness | |
| 2022.04 | Budget impact of KEYTRUDA for the treatment of patients with recurrent or metastatic (R/M) and locally advanced (LA) cutaneous squamous cell carcinoma (cSCC) in the United States | Li XJ, Muston D, Ramakrishnan K, Black CM, Hughes R, Weston G, Lucherini S | International Journal of Radiation Oncology, 197, Vol 112, Issue 5, E55, April 2022 | View Publication | Oncology | Economic models |
| 2022.03 | Budget impact of KEYTRUDA in combination with chemotherapy as neoadjuvant therapy and continued as a single agent as adjuvant therapy for patients with high-risk early-stage triple negative breast cancer in the US | Huang M, Haiderali A, Swales O, Yi Y | Poster presented at AMCP, March 2022 | View Publication | Oncology | Economic models |
| 2022.02 | Budget impact of KEYTRUDA for the treatment of patients with recurrent or metastatic (R/M) and locally advanced (LA) cutaneous squamous cell carcinoma (cSCC) in the United States | Li XJ, Muston D, Ramakrishnan K, Black CM, Hughes R, Weston G, Lucherini S | Poster presented at the Multidisciplinary Head and Neck Cancers Symposium, February 2022 | View Publication | Oncology | Economic models |
| 2022.01 | Health-related quality of life (HRQoL) in patients (pts) with advanced esophageal squamous cell carcinoma (ESCC) treated with nivolumab (N) plus chemotherapy (CT) or nivo plus ipilimumab (I) versus chemo: Results from CheckMate 648. | Bridgewater J, Chau I, Gricar J, Blum SI, Taylor F, Lawrance R, Padilla B, Yip C, Wyrwicz L | Poster presented at ASCO Gastrointestinal Cancers Symposium, January 2022. Journal of Clinical Oncology, 2022;40(4):262 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2022.01 | Health-related quality of life in patients with advanced esophageal squamous cell carcinoma treated with nivolumab plus chemotherapy or nivolumab plus ipilimumab versus chemotherapy: results from CheckMate 648 | Bridgewater J, Chau I, Gricar J, Blum SI, Taylor F, Lawrance R, Padilla B, Yip C, Wyrwicz L | Poster presented at ASCO-GI, January 2022. Journal of Clinical Oncology, 2022;40(4 _suppl): 262. | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2022 | Utility assessment of moderate to severe thyroid eye disease health states | Smith TJ, Cockerham K, Lelli G, Choudhary C, Taylor S, Barretto N, Enstone A, Oliver L, Lynch J, Holt RJ | JAMA Ophthalmol. 2023; 141(2):159-166 | View Publication | Ophthalmology, Immunology | Evidence synthesis/utility generation |
| 2022 | Preference for type 2 diabetes therapies in the United States: A discrete choice experiment | Shubrook J, Radin M, Ali A, Chubb B, DiPietrantonio K, Collings H, Wyn R, Smith M | Advances in Therapy vol. 39, 4114–4130 (2022) | View Publication | Endocrinology/Metabolic diseases | Evidence synthesis/utility generation |
| 2022 | Disutility of injectable therapies in obesity and type 2 diabetes mellitus: General population preferences in the UK, Canada, and China | McEwan P, Baker-Knight J, Ásbjörnsdóttir B, Yi Y, Fox A, Wyn R | The European Journal of Health Economics, 24, 187–196 (2023) | View Publication | Endocrinology/Metabolic diseases | Evidence synthesis/utility generation |
| 2022 | Real-world impact of rotavirus vaccination in European healthcare settings: A systematic literature review | Benčina G, Costantino C, Mameli C, Sabale U, Murtagh J, Newman R, Ahern A, Bhaila R, Orrico Sanchez A, Martinon-Torres F, Carias C | Expert review of Vaccines, vol. 21, 8, 1121-1136 (2022) | View Publication | Gastroenterology, Infectious diseases, Vaccines | Literature/landscape reviews |
| 2022 | Vaccine uptake and barriers to vaccination among at-risk adult populations in the US | Kolobova I, Nyaku MK, Karakusevic A, Bridge D, Fotheringham I, O’Brien M | Human Vaccines and Immunotherapeutics, 18:5 | View Publication | Vaccines | Literature/landscape reviews |
| 2022 | Burden of vaccine-preventable diseases among at-risk adult populations in the US | Kolobova I, Nyaku MK, Karakusevic A, Bridge D, Fotheringham I, O’Brien M | Human Vaccines and Immunotherapeutics, 18:5 | View Publication | Vaccines | Treatment pathways/burden of illness |
| 2022 | Burden associated with Fabry disease and its treatment in 12- to 15-year-olds: Results from an international survey | McCaughey G, MacCulloch A, Bashorum L, Evans O, Humphries A, Perry R | Archives of Disease in Childhood 2022;107:A201-A202 | View Publication | Genetic diseases, Rare diseases | Evidence synthesis/utility generation, Treatment pathways/burden of illness |
| 2022 | Three-year follow-up and patient-reported outcomes from CheckMate 078: Nivolumab versus docetaxel in a predominantly Chinese patient population with previously treated advanced non-small cell lung cancer | Chang J, Wu Y-L, Lu S, Wang J, Mok T, Zhang L, Feng J, Wu L, Tu H-Y, Zhang Y, Luft A, Zhou J-Y, Ma Z, Lu Y, Hu C, Shi Y, Poddubskaya E, Soo RA, Chia YH, Penrod JR, Taylor F, Lawrance R, Blum SI, Sun X, Juarez-Garcia A, Moreno-Koehler A, Li Ang, Li Amy, Cheng Y | Lung Cancer, 2022;165: 71-81. | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2022 | Interleukin-1 trap rilonacept improved health-related quality of life and sleep in patients with recurrent pericarditis: Results from the Phase 3 clinical trial RHAPSODY | Brucato A, Lim-Watson M, Klein AL, Imazio M, Cella D, Cremer P, LeWinter M, Luis S, Lin D, Lotan D, Pancrazi M, Trotta L, Klooster B, Litcher-Kelly L, Zou L, Magestro M, Wheeler A, Paolini J | Journal of the American Heart Association, 2022;11(20): e023252. | View Publication | Cardiovascular | Psychometric evaluation and statistical analysis of COAs |
| 2022 | Psychometric performance of the Primary Mitochondrial Myopathy Symptom Assessment (PMMSA) in a randomized, double-blind, placebo-controlled crossover study in subjects with mitochondrial disease | Gwaltney C, Stokes J, Aiudi A, Mazar I, Ollis S, Love E, Karaa A, Houts CR, Wirth RJ, Shields AL | Journal of Patient-Reported Outcomes, 2022;6: 129. | View Publication | Genetic diseases, Musculoskeletal diseases | Psychometric evaluation and statistical analysis of COAs |
| 2022 | Novel Questionnaires for assessing signs and symptoms of Eosinophilic Esophagitis in children | Kamat S, Yaworsky A, Guillemin I, Krohe M, Litcher-Kelly L, McLafferty M, Lamoureux RE, Lowe C, Chehade M, Spergel JM, Weinfurt K, Turner-Bowker DM | The Journal of Allergy and Clinical Immunology: In Practice, 2022;10(7): 1856-1863. | View Publication | Allergies, Immunology | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2022 | Determining severity strata for three atopic dermatitis patient-reported outcome questionnaires: Defining severity score ranges for the Worst Pruritus Numerical Rating Scale and the Atopic Dermatitis Symptom and Impact Scales (ADerm-SS and ADerm-IS) | Silverberg JI, Simpson EL, Calimlim BM, Litcher-Kelly L, Li X, Sun X, Leshem YA | Dermatology and Therapy, 2022;12: 2817–2827. | View Publication | Dermatology | Psychometric evaluation and statistical analysis of COAs |
| 2022 | Estimands in Oncology ASA scientific working group | Siegel J, Wang Y, Lawrance R, Weber H-J, Wei J, Liu Y, Mercier F, Degtyarev E, Rufibach K, Englert S | Poster presented at Asia BIOP, 2022 | Oncology | Psychometric evaluation and statistical analysis of COAs | |
| 2022 | Special interest group "Estimands in Oncology", sponsored by PSI and EFSPI | Wei J, Wang Y, Lawrance R, Weber H-J, Liu Y, Mercier F, siegel J, Degtyarev E, Rufibach K, Englert S | Poster presented at China Summit, 2022 | Oncology | Psychometric evaluation and statistical analysis of COAs | |
| 2022 | Patient, family member and physician perspectives and experiences with AML treatment decision-making | LeBlanc T, Russell N, Hernandez-Aldama L, Panter C, Bell T, Welch V, Merino Vega D, O'Hara L, Stein J, Barclay M, Peloquin F, Brown A, Healy J, Morgan L, Gater A, Hohman R, Amer K, Maze D, Walter R | Oncology and Therapy, 2022;10:421-440 | View Publication | Oncology | Qualitative patient-centered research and evaluation of COAs |
| 2022 | Qualitative research with patients and physicians to assess content validity and meaningful change on ESSDAI and ESSPRI in Sjögren’s | Cooper C, Wratten S, Williams-Hall R, Bookman AAM, Ndife B, Hueber W, Goswami P | Rheumatology and Therapy, 2022;9:1499-1515 | View Publication | Immunology | Qualitative patient-centered research and evaluation of COAs |
| 2022 | Patient experience of moderate asthma attacks: qualitative research in the USA and Germany | Tabberer M, Wells JR, Chandler D, Abetz-Webb L, Zhang S, Meeraus W, Fowler A, Slade D | Journal of Patient Reported Outcomes, 2022;6:117 | View Publication | Respiratory diseases | Qualitative patient-centered research and evaluation of COAs |
| 2022 | Comparison of literature review, social media listening, and qualitative interview research methods in generating patient-reported symptom and functional impact concepts of presbyopia | Findley A, Sharma G, Bentley S, Arbuckle R, Patalano F, Naujoks C, Kommineni J, Tyagi N, Lehane A, Wolffsohn JS, chiva-Razavi S | Ophthalmolgy and Therapy, 2022;12:501-516 | View Publication | Ophthalmology | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs |
| 2022 | Content validity of Sjogren's syndrome symptom diary and functional Assessment of Chronic Illness Therapy-Fatigue in Patients with Shogren's | Griffiths N, Wratten S, Flynn J, Bookman AA, Ndife B, Hueber W, Goswami P | Rheumatology and Therapy, 2022;9(6):1559-1574 | View Publication | Immunology | Qualitative patient-centered research and evaluation of COAs |
| 2022 | Qualitative evaluation of the symptoms and quality of life impacts of long-chain fatty acid oxidation disorders | Williams-Hall R, Tinsley K, Kruger E, Johnson C, Bowden A, Cimms T, Gater A | Therapeutic Advances in Endocrinology and Metabolism, 2022;13:20420188211065655 | View Publication | Endocrinology/Metabolic diseases | Qualitative patient-centered research and evaluation of COAs |
| 2022 | How strong should my anchor be for estimating group and individual level meaningful change? A simulation study assessing anchor correlation strength and the impact of sample size, distribution of change scores and methodology on establishing a true meaningful change threshold | Griffiths P, Sims J, Williams A, Williamson N, Cella D, Brohan E, Cocks K | Quality of Life Research, 2022;32:1255-1264 | View Publication | Psychometric evaluation and statistical analysis of COAs | |
| 2022 | Three-year follow-up and patient-reported outcomes from CheckMate 078: Nivolumab versus docetaxel in a predominantly Chinese patient population with previously treated advanced non-small cell lung cancer | Chang J, Wu Y-L, Lu S, Wang J, Mok T, Zhang L, Feng J, Wu L, Tu H-Y, Zhang Y, Luft A, Zhou J-Y, Ma Z, Lu Y, Hu C, Shi Y, Poddubskaya E, Soo RA, Chia YH, Penrod JR, Taylor F, Lawrance R, Blum SI, Sun X, Juarez-Garcia A, Moreno-Koehler A, Li Ang, Li Amy, Cheng Y | Lung Cancer, 2022;165:71-81 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2022 | How scoring limits the usability of minimal important differences (MIDs) as responder definition (RD): an exemplary demonstration using EORTC QLQ-C30 subscales | Cocks K, Buchanan J | Quality of Life Research, 2022;32:1247-1253 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2022 | Comparing patient global impression of severity and patient global impression of change to evaluate test-retest reliability of depression, non-small cell lung cancer, and asthma measures | Eremenco S, Chen W-H, Blum SI, Bush EN, Bushnell DM, DeBusk K, Gater A, Nelsen L, Coons SJ | Quality of Life Research, 2022;31:3501-3512 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2022 | Validity of a single-item indicator of treatment side effect bother in a diverse sample of cancer patients | Griffiths P, Peipert JD, Leith A, Rider A, Morgan L, Cella D, Cocks K | Supportive Care in Cancer, 2022;30:3613-3623 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2022 | The endometriosis daily diary: qualitative research to exlore the patient experience of endometriosis and inform the development of a patient-reported outcome (PRO) for endometriosis-related pain | Guan Y, Nguyen AM, Wratten S, Randhawa S, Weaver J, Arbelaez F, Fauconnier A, Panter C | Journal of Patient Reported Outcomes, 2022;6:5, https://doi.org/10.1186/s41687-021-00409-8 | View Publication | Women's health | Qualitative patient-centered research and evaluation of COAs, Literature and COA instrument reviews, COA instrument development or modification |
| 2022 | Minimally important differences of EORTC QLQ-C30 scales in patients with lung cancer or malignant pleural mesothelioma – Interpretation guidance derived from two randomized EORTC trials | Koller M, Musoro JZ, Tomaszewski K, Coens C, King MT, Sprangers MAG, Groenvold M, Cocks K, Velikova G, Flechtner H-H, Bottomley A | Lung Cancer, 2022;167:65-72 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2022 | Generation of evidence supporting the content validity of SF-36, FACIT-Fatigue, and Lupus-QoL, and novel patient-reported symptom items for use in patients with systemic lupus erythematosus (SLE) and SLE with lupus nephritis (LN) | Williams-Hall R, Berry P, Williamson N, Barclay M, Roberts A, Gater A, Tolley C, Bradley H, Ward A, Hsia E, Zuraw Q, DeLong P, Touma Z, Strand V | Lupus Science and Medicine, 2022;9:e000712 | View Publication | Immunology | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2022 | A qualitative study to explore the symptoms and impacts of Crohn's disease and to develop the Crohn's Disease Diary | Williams-Hall R, Trennery C, Sully K, Wratten S, Francis A, Chandler D, Flynn J, Turner M, Marks DJB, Sackeyfio A, Bracher M, Walker A, Walker-Nthenda L, Arbuckle R, Keeley T | Quality of Life Research, 2022;32:209-223 | View Publication | Gastroenterology, Immunology | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2022 | Development of a patient-reported outcome (PRO) tool to support joint health management for patients with haemophilia B aged 8 years and older | Bladen M, Sivasubramaniyam S, Klooster B, Shields A, Khan N | Poster presented at European Association for Haemophilia and Allied Disorders | Hematology, Pediatric care | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification | |
| 2022 | Understanding patient and caregiver perspectives using a dyad approach for data collection: A systematic review of the literature | Loftus J, Yaworsky A, Turner-Bowker DM, Palladino A, Lamoureux R, Love E, Pleil AM | Patient Experience Journal, 2022;9(1): 71-81. | View Publication | Literature and COA instrument reviews | |
| 2021.12 | Exploring the impact of heterogeneity in economic evaluations: Current practice and implications | Komakoma L, Yi Y | Poster presented at virtual ISPOR, December 2021. Value in Health vol. 25,1,S93 | View Publication | Rare diseases | Literature/landscape reviews, HTA/reimbursement, Access/HEOR consultancy |
| 2021.12 | Landscape review exploring acceptability of oncology surrogate endpoints by NICE (England), CADTH (Canada) and PBAC (Australia) from 2010 to 2021 | Brien H, Humphries AC, Wu E | Poster presented at virtual ISPOR, December 2021. Value in Health vol. 25,1,S179 | View Publication | Oncology | Literature/landscape reviews |
| 2021.12 | What is are the PRO objectives & how are they being analysed - applying the estimand frame. "Backfitting" - MMRM & Time to deterioration | Lawrance R, Floden L, Skaltsa K, Siegel J, Degtyarev E, Regnault A, Huang X, Hudgens S, Bring J, Corson S, Hadi M | PRO Task Force | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2021.12 | Impact of elotuzumab plus pomalidomide/dexamethasone on health-related quality of life for patients with relapsed/refractory multiple myeloma: final data from the phase 2 ELOQUENT-3 trial | Weisel K, Dimopoulos MA, San Miguel J, Paner A, Engelhardt M, Taylor F, Lord-Bessen H, Yao D, Yip C, Greenwood M, Tang J, Cavo M | Presented at the American Society of Hematology (ASH) Annual Meeting, December 2021. Blood, 2021;138(Supplement 1): 1662. | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2021.11 | Psychometric Evaluation of the Idiopathic Hypersomnia Severity Scale | Banderas B, Morris S, Hickey L, Lowe C, Arenson E, Lin J, Chandler P, Dauvilliers Y | Poster presented at Psych Congress, San Antonio TX, USA, 29th October to 1st November 2021. Neurology, 2022;98(18 Supplement): 1169. | View Publication | CNS/Neurology | Psychometric evaluation and statistical analysis of COAs |
| 2021.1 | Content Validity of the Idiopathic Hypersomnia Severity Scale | Srivastava B, Morris S, Banderas B, Lowe C, Dauvilliers Y | Poster presented at 146th Annual Meeting of the American Neurological Association, 17th to 19th October 2021 | CNS/Neurology | Qualitative patient-centered research and evaluation of COAs | |
| 2021.09 | Treatment-resistant depression: Expert consensus identified real-world experience and individualized care as key considerations for novel treatments in major depressive disorder | Nash A, Borentain S, O'Hara M, Zhang Q, Barbreau S, Haughey S, Bossie C, Daly E, Mathews M, Ming T, Denee T, Nagda N, Riley D, Perry R | Poster presented at the virtual National Network of Depression Centers Annual Conference, September 2021 | CNS/Neurology | Evidence synthesis/utility generation | |
| 2021.07 | Development of a Clinical Global Impression of Change (CGI-C) and a Caregiver Global Impression of Change (CaGI-C) measure for ambulant individuals with Duchenne muscular dystrophy | Staunton H, Trennery C, Arbuckle R, Guridi M, Zhuravleva E, Furlong P, Fischer R, Hall R | Health and Quality of Life Outcomes, 19:184 | View Publication | Musculoskeletal diseases, Genetic diseases, Rare diseases | COA instrument development or modification, Qualitative patient-centered research and evaluation of COAs |
| 2021.05 | Pet owners’ willingness to pay for therapy outcomes in acute canine pruritus | Greaves M, Wright A, Gildea E, Longstaff L, Wyn R, Nagda N, DiPietrantonio K, Enstone A, Riley D | Presented at the BSAVA congress, May 2021 | Animal health | Evidence synthesis/utility generation | |
| 2021.05 | Predicting the impact of vaccination strategies in the COVID-19 pandemic using a Susceptible-Exposed-Infectious-Removed (SEIR) model | Song W, Yi Y | Poster presented at virtual ISPOR, May 2021. Value in Health vol. 24,1,S108 | View Publication | Infectious diseases, Vaccines | Economic models, Access/HEOR consultancy |
| 2021.05 | Pet owners’ willingness to pay for therapy outcomes in feline pain associated with osteoarthritis | Longstaff L, Bartram D, Gildea E, Wright A, Riley D, Nagda N, DiPietrantonio K, Enstone A, Wyn R | Presented at the BSAVA congress, May 2021 | View Publication | Animal health | Evidence synthesis/utility generation |
| 2021.05 | Healthcare resource utilization of patients with resected esophageal cancer or gastroesophageal junction cancer receiving adjuvant nivolumab treatment versus placebo: results from the CheckMate 577 trial | Lawrance R, Singh P, Leso A, Moreno-Koehler A, Padilla B, Sun X, Taylor F, Blum S | Poster presented at ISPOR, May 2021. Value in Health, 2021;24(1): S34-S35. | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2021.04 | Systematic literature review of the epidemiology of advanced prostate cancer and associated HRR gene alterations | Shore N, Oliver L, Shui I, Gayle A, Wong OY, Kim J, Payne S, Amin S, Ghate S | Journal of Urology, vol. 205, 4, 977-986 (April 2021) | View Publication | Oncology | Literature/landscape reviews |
| 2021.01 | Preference for oral and injectable GLP-1 RA therapy profiles in Japanese patients with type 2 diabetes: A discrete choice experiment | Igarashi A, Bekker Hansen B, Langer J, Tavella F, Collings H, Davies N, Wyn R | Adv Ther. 2021 Jan;38(1):721-738 | View Publication | Endocrinology/Metabolic diseases | Evidence synthesis/utility generation |
| 2021 | Burden of male hypogonadism and major co-morbidities, and the clinical, economic and humanistic benefits of testosterone therapy: A narrative review | Yeo S, Holl K, Peñaherrera N, Wissinger U, Anstee K, Wyn R | Clinicoecon Outcomes Res. 2021;13:31-38 | View Publication | Men's health, Urology/Urogenital | Treatment pathways/burden of illness |
| 2021 | Real-world use of ceftolozane/tazobactam: A systematic literature review | Puzniak L, Dillon R, Palmer T, Collings H, Enstone A | Antimicrob Resist Infect Control 10, 68 (2021) | View Publication | Infectious diseases | Literature/landscape reviews |
| 2021 | Systematic literature review of real-world evidence of ceftolozane/tazobactam for the treatment of respiratory infections | Puzniak L, Dillon R, Palmer T, Collings H, Enstone A | Infectious Diseases and Therapy, 10, 1227–1252 (2021) | View Publication | Infectious diseases, Respiratory diseases | Literature/landscape reviews |
| 2021 | Understanding the unmet needs in insomnia treatment: A systematic literature review of real-world evidence | Campbell R, Chabot I, Rousseau B, Bridge D, Nicol G, Meier G | International Journal of Neuroscience, DOI: 10.1080/00207454.2021.1995383 | View Publication | CNS/Neurology | Literature/landscape reviews |
| 2021 | Minimally important differences for the EORTC QLQ-C30 in prostate cancer clinical trials | Gamper EM, Musoro JZ, Coens C, Stelmes J-J, Falato C, Groenvold M, Velikova G, Cocks K, Flechtner H-H, King MT, Bottomley A | BMC Cancer, 2021;21:1083, https://doi.org/10.1186/s12885-021-08609-7 | View Publication | Oncology, Men's health | Psychometric evaluation and statistical analysis of COAs |
| 2021 | Linguistic validation of the Canine Brief Pain Inventory (CBPI) for global use | Wells J, Young A, Crane A, Moyaert H, Michels G, Wright A | Frontiers in Veterinary Science, 2021;8, https://doi.org/10.3389/fvets.2021.769112 | View Publication | Animal health | COA instrument development or modification |
| 2021 | FABry Disease Patient-Reported Outcome-GastroIntestinal (FABPRO-GI): A new Fabry disease-specific gastrointestinal outcomes instrument | Shields AL, Lamoureux RE, Taylor F, et al | Quality of Life Research, 2021;30: 2983–2994. | View Publication | Genetic diseases, Rare diseases, Gastroenterology | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Literature and COA instrument reviews |
| 2021 | Development of symptom-focused outcome measures for advanced and indolent systemic mastocytosis: the AdvSM-SAF and ISM-SAF© | Taylor F, Akin C, Lamoureux RE, Padilla B, Green T, Boral AL, Mazar I, Mar B, Shields AL, Siebenhaar F | Orphanet Journal of Rare Disease, 2021;16: 414. | View Publication | Hematology, Rare diseases | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Literature and COA instrument reviews |
| 2021 | A qualitative evaluation of the patient experience of erosive and non-erosive hand osteoarthritis | Panter C, Berry P, Chauhan D, Fernandes S, Gatsi S, Park J, Wells JR, Arbuckle RA | Journal of Patient Reported Outcomes, 2021;5:1-17, https://doi.org/10.1186/s41687-021-00286-1 | View Publication | Musculoskeletal diseases | Qualitative patient-centered research and evaluation of COAs |
| 2021 | Reliability, validity and important difference estimates for the NCCN-FACT Ovarian Symptom Index-18 (NFOSI-18) | Trigg A, Kelly M, Iadeluca L, Chang J, Moreno-Koehler A, Yaworsky A, Krohe M, Rider A, Cappelleri J, Cella D, Cocks K | Future Oncology, 2021;17(3):3951-3964 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2021 | Qualitative research to support the content validity of the Immune Thrombocytopenia (ITP) Life Quality Index (ILQI) | Cooper N, Cuker A, Bonner N, Ghanima W, Provan D, Morgan M, Barbara T, D'Alessio D, Arnold D, Ricardo V | British journal of Haematology, 2021;194(4):759-766 | View Publication | Hematology, Immunology | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2021 | Patients’ and clinicians’ perspectives on item importance, scoring, and clinically meaningful differences for the Endometriosis Symptom Diary (ESD) and Endometriosis Impact Scale (EIS) | Kitchen H, Seitz C, Trigg A, Aldhouse N, Willgoss T, Schmitz H, Gater A, Gerlinger C, Haberland C | Health and Quality of Life Outcomes, 2021,19:7 | View Publication | Women's health | Qualitative patient-centered research and evaluation of COAs |
| 2021 | A qualitative exploration of the patient experience of erosive and non-erosive hand osteoarthritis | Panter C, Berry P, Chauhan D, Fernandes S, Gatsi S, Park J, Wells JR, Arbuckle R | Journal of Patient Reported Outcomes, 2021;5:18 | View Publication | Musculoskeletal diseases | Qualitative patient-centered research and evaluation of COAs |
| 2021 | A comparison of generic and condition-specific preference-based measures using data from Nivolumab trials: EQ-5D-3L, Mapping to the EQ-5D-5L, and European Organisation for Research and Treatment of Cancer Quality of Life Utility measure-Core 10 dimensions | Shaw JW, Bennett B, Trigg A, DeRosa M, Taylor F, Kiff C, Ntais D, Noon K, King MT, Cocks K | Value in Health, 2021;24(11):1651-1659 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2021 | Understanding the relationship between the 32-item motor function measure and daily activities from an individual with spinal muscular atrophy and their caregivers’ perspective: a two-part study | Duong T, Braid J, Saunton H, Barriere A, Petridis F, Reithinger J, Cruz R, Jarecki J, De Lemus M, Gusset N, Broekgaarden R, Randhawa S, Flynn J, Arbuckle R, Reif S, Yang L, De Martini A, Vuillerot | BMC Neurology, 2021;21:143 | View Publication | CNS/Neurology, Genetic diseases, Rare diseases, Musculoskeletal diseases | Qualitative patient-centered research and evaluation of COAs, Psychometric evaluation and statistical analysis of COAs |
| 2021 | Patient-Reported Symptoms and Health-Related Quality of Life Impacts of Idiopathic Hypersomnia | Srivastava B, Morris S, Banderas B, Lowe C, Dauvilliers Y | Poster presented at Annual Meeting of the American Neurological Association | CNS/Neurology | Qualitative patient-centered research and evaluation of COAs | |
| 2021 | Clinically relevant activity of reproxalap, a novel RASP inhibitor, in allergic conjunctivitis: The phase 3 ALLEVIATE trial. | Clark D, Cavanagh B, Shields AL, Karpecki P, Sheppard J, Brady TC | American Journal of Ophthalmology, 2021;230: 60-67. | View Publication | Ophthalmology | Psychometric evaluation and statistical analysis of COAs |
| 2021 | Development and content validity of the Barth Syndrome Symptom Assessment (BTHS‑SA) for adolescents and adults | Gwaltney C, Stokes J, Aiudi A, Mazar I, Ollis S, Love E, Shields A | Orphanet Journal of Rare Disease, 2021;16: 264. | View Publication | Genetic diseases, Rare diseases, Pediatric care | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2021 | PROM data visualization in the clinical setting: what do clinicians need to see? | Henkle E, Arenson E | Workshop presented at ISOQOL Virtual 2021 | Literature and COA instrument reviews | ||
| 2021 | Health-related quality of life in patients with recurrent pericarditis: results from a phase 2 study of rilonacept | Lin D, Klein A, Cella D, Beutler A, Fang F, Magestro M, Cremer P, LeWinter M, Sushil L, Abbate A, Ertel A, Litcher-Kelly L, Klooster B, Paolini J | BMC Cardiovascular Disorders, 2021. | View Publication | Cardiovascular | Qualitative patient-centered research and evaluation of COAs, Psychometric evaluation and statistical analysis of COAs |
| 2021 | Systematic review of patient experience with a less frequent injection schedule for growth hormone deficiency | Loftus J, Yaworsky A, Roland C, Turner-Bowker D, McLafferty M, Su Sylvia, Lamoureux R | Poster presented at AMCP Annual Meeting 2021 | Endocrinology/Metabolic diseases | Literature and COA instrument reviews | |
| 2021 | Psychometric evaluation of the Indolent Systemic Mastocytosis Symptom Assessment Form (ISM-SAF) in a phase 2 clinical study | Padilla B, Shields AL, Taylor F, Li X, McDonald J, Green T, Boral AL, Lin HM, Akin C, Siebenhaar F, Mar B | Orphanet Journal of Rare Disease, 2021;16: 434. | View Publication | Hematology | Psychometric evaluation and statistical analysis of COAs |
| 2021 | Psychometric evaluation of the Advanced Systemic Mastocytosis Symptom Assessment Form (AdvSM-SAF) | Taylor F, Li X, Yip C, Padilla B, Mar B, Green T, Oren R, Boral AL, Lin HM, Shields AL, Gotlib J | Leukemia Research, 2021;108: 106606. | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2021 | A novel patient-reported outcomes instrument assessing the side effects of peanut oral immunotherapy. | Turner-Bowker DM, Jalbert JJ, Krohe M, Yaworsky A, Kelly MT, Padilla B, Chaston E, Radin A, Mastey V, Nadeau KC | Ann Allergy Asthma Immunol, 2021;126(1): 61-68. | View Publication | Immunology | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Literature and COA instrument reviews |
| 2021 | Development and Content Validity of a Novel Myelodysplastic Syndromes Symptom Diary | Vallow S, Brandt P, Galipeau N, Lamoureux R, Su S, Yim A, Volpi C, Shields AL | Blood, 2021;138(1):4654. | View Publication | Hematology | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2021 | CheckMate 577: health-related quality of life in a randomized, double-blind phase 3 study of nivolumab versus placebo as adjuvant treatment in patients with resected esophageal cancer or gastroesophageal junction cancer | Van Cutsem E, Singh P, Cleary JM, Kelly RJ, Moehler M, Kudzal J, Mendez G, Motoyama S, Elimova E, Grootscholten C, Sun X, Taylor F, Lawrance R, Padilla B, Moreno-Koehler A, Zhang J, Blum SI, Ajani JA | Oral presentation at ASCO-GI. Journal of Clinical Oncology, 2021;39(supplement 3): 167-167. | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2020.12 | Budget impact of Ontruzant for the treatment of breast cancer and gastric cancer in the United States | Huang M, Singhal P, Shinde R, Wilkes S, Nagda N, Yi Y, Lucherini S | Poster presented at the San Antonio Breast Cancer Symposium (SABCS), December 2020 | View Publication | Oncology | Economic models |
| 2020.12 | Health-Related Quality of life (HRQoL) in Paediatric Subjects with Partial Onset Seizures (POS) or Primary Generalized Tonic Clonic (PGTC) Seizures receiving Adjunctive Perampanel | Trigg A, Brohan E, Cocks K, Tahami A, Campbell R, Ngo LY | Poster presented at American Epilepsy Society Annual meeting, December 2020 | CNS/Neurology, Pediatric care | Psychometric evaluation and statistical analysis of COAs | |
| 2020.12 | Psychometric Evaluation of Three Patient-Reported Outcome Questionnaires Assessing the Symptoms and Impacts of Atopic Dermatitis in Adults and Adolescents | Silverberg JI, Simpson EL, Litcher-Kelly L, McDonald J, Calimlim BM, Leshem YA | Poster presented at the Revolutionizing Atopic Dermatitis (Virtual Conference; 13-14 December 2020) | View Publication | Dermatology, Pediatric care | Psychometric evaluation and statistical analysis of COAs |
| 2020.12 | Content Validity of the Atopic Dermatitis Symptom Scale (ADerm-SS) and Atopic Dermatitis Impact Scale (ADerm-IS) in Adolescents to Assess the Symptoms and Impacts of Atopic Dermatitis | Silverberg JI, Simpson EL, McLafferty M, Su S, Medrano P, Calimlim BM, Paller AS | Poster presented at the Revolutionizing Atopic Dermatitis (Virtual Conference; 13-14 December 2020) | View Publication | Dermatology, Pediatric care | Qualitative patient-centered research and evaluation of COAs |
| 2020.11 | Estimating the economic and health impact of the PD-1/PD-L1 Inhibitor Class in Bulgaria | Dimitrova M, Todorov S, Djambazov S, Slavchev G, Swales O, Hughes R, Nagda N, Lucherini S | Poster presented during virtual ISPOR, November 2020. Value in Health vol. 23,2,S451 | View Publication | Oncology | Economic models, Evidence synthesis/utility generation |
| 2020.11 | Estimating the economic and health impact of the PD-1/PD-L1 Inhibitor Class in Finland | Lehto P, Suvanto T, Aro M, Normand R, Nagda N, Lucherini S | Poster presented during virtual ISPOR, November 2020. Value in Health vol. 23,2,S458 | View Publication | Oncology | Economic models, Evidence synthesis/utility generation |
| 2020.11 | Estimating the budget and health impact of the PD-1/PD-L1 Inhibitor Class in Switzerland | Guggisberg P, Huwiler S, Urbinello D, Rachev B, Swales O, Nagda N, Lucherini S | Poster presented during virtual ISPOR, November 2020. Value in Health vol. 23,2,S459 | View Publication | Oncology | Economic models, Evidence synthesis/utility generation |
| 2020.11 | Evaluating the value of low-dose aspirin in patients at high risk of cardiovascular disease | Withers K, Stainthorpe A, Anstee K, Detering E, Yeo S | Poster presented at virtual ISPOR, November 2020. Value in Health vol. 23,2,S502 | View Publication | Cardiovascular | Literature/landscape reviews, Evidence synthesis/utility generation |
| 2020.11 | The use of healthcare resource utilization costs for treatment-resistant depression as evidence for decision-making in the Canadian healthcare system | Zhang Q, O'Hara M, Zante D, Pone E, Fadeyi I, Hopwood N, Perry R | Poster presentedt at the virtual CADTH Symposium, 2020 | CNS/Neurology | Evidence synthesis/utility generation | |
| 2020.11 | A Novel Approach to Assessing the Severity Ranges of Commonly Used Atopic Dermatitis Clinical Outcome Assessments | Sun X, Li X, Banderas B, Arenson E, Yip C, Milligan G, Derosa M | Poster presentation at ISPOR, November 2020 | View Publication | Dermatology | Psychometric evaluation and statistical analysis of COAs |
| 2020.11 | Whose choice is it anyway? A multi-national and multi-stakeholder perspective on shared treatment decision making in older adults with acute myeloid leukaemia | Russell NH, LeBlanc TW, Hernandez-Aldama L, Panter C, Bell TJ, Morgan L, Peloquin F, Gater A, Welch V, O’Hara L, Hohman R, Merino DM, Walter RB, Horikoshi N, Maze D | Poster presented at British Society for Hematology Conference, November 2020 | View Publication | Oncology | Qualitative patient-centered research and evaluation of COAs |
| 2020.11 | Health State Utility Values By Time to Death in Recurrent or Metastatic Squamous-Cell Carcinoma of the Head and Neck | Noon K, Trigg A, DeRosa M, Singh P, Bennett B, Taylor F, Cocks K | Poster presented at ISPOR, November 2020. Value in Health, 2020;23(2): S474 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2020.11 | Quantitative Exploration to Characterize the Burden of END-STAGE Kidney Disease (ESKD) with Dialysis | Bonner N, Litjens P, Mason B, Ewy G, Griffiths P, O'Hara L | Poster presented at ISPOR, November 2020. Value in Health, 2020;23(Supp 2):S755 | View Publication | CNS/Neurology | Psychometric evaluation and statistical analysis of COAs |
| 2020.11 | “I couldn´t stand the fever anymore, it felt like my head was going to explode”: A qualitative study exploring the experience of dengue-associated febrile illness | Marks MA, Wells JR, Jones AM, Gater A, Calhoun SR, Coller B-A, Russell K, Morrison AC, Paz-Soldan VA, Endy T, thomas S, Saretsky T, Panter C | Poster presented at American Society of Tropical Medicine and Hygiene Meeting, November 2020 | Infectious diseases | Qualitative patient-centered research and evaluation of COAs | |
| 2020.11 | Qualitative Interviews to Explore Drivers and Behaviours Associated with Medication NON-Adherence across a Range of Diseases, Treatment Modalities, and Countries | Morgan L, Exall E, Bentley S, Rossom R, Roche N, Higgins V, Piercy J, Arbuckle R, Khunti K | Podium presentation at ISPOR, November 2020. Value in Health, 2020;23(2):S399 | View Publication | Qualitative patient-centered research and evaluation of COAs | |
| 2020.11 | Health State Utility Values By Time to Death in Recurrent or Metastatic Squamous-Cell Carcinoma of the Head and Neck | Noon K, Trigg A, DeRosa M, Singh P, Bennett B, Taylor F, Cocks K | Poster presented at ISPOR, November 2020. Value in Health, 2020;23(Supp 2):S474 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2020.11 | The Psychological, Emotional, Physical, Social, and Economic Burden of Caring for a CHILD with Respiratory Syncytial VIRUS (RSV): A Qualitative and Quantitative Literature Review | Randhawa S, Wratten S, Abetz-Webb L, Arbuckle R, Scott J | Poster presented at ISPOR, November 2020. Value in Health, 2020;23(Supp 2):S731 | View Publication | Respiratory diseases, Pediatric care | Literature and COA instrument reviews |
| 2020.11 | Measuring the Intensity of Dengue Illness: Modification of an Existing Patient-Reported Outcome Measure (PRO) in Low and Middle Income Countries | Wells JR, Jones AM, Panter C, Gater A, Calhoun S, Coller BA, Russell KL, Marks MA, Morrison AC, Paz-Soldan VA, Endy TP, Thomas SJ, Saretsky T | Poster presented at ISPOR, November 2020. Value in Health, 2020;23(Supp 2):S571 | View Publication | Infectious diseases, Pediatric care | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2020.11 | Dimensional Structure of Dermatology Life Quality Index in Patients with Atopic Dermatitis: Bifactor Model Approach | Sun X, Li X, Arenson E, Derosa M, Yip C, Milligan G, Banderas B | Poster Presentation at ISPOR, November 2020. Value in Health, 2020;23(2): S676-S677. | View Publication | Dermatology | Psychometric evaluation and statistical analysis of COAs |
| 2020.1 | Three-year analysis of healthcare utilization in patients with low-grade upper tract urothelial cancer (LG-UTUC) treated with ureteroscopic management or RNU | Thacker K, Smith G, Begum N, Kamgar F, Pilossoph L, Oliver L, Moore W, Misir S, Mikhelashvili T | Poster presented at virtual AMCP Nexus conference, October 2020 | Oncology | Evidence synthesis/utility generation | |
| 2020.1 | Targeted literature review (TLR) of the real-world treatment patterns and outcomes among mCRPC patients in EU5, Japan and Australia | Oliver L, Ghate S, Shui I, Gayle A, Wong O Y, Kim J, Payne S, Shore N | Poster presented during PROSCA (Global congress on prostate cancer), October 2020 | Oncology | Literature/landscape reviews | |
| 2020.1 | Evaluation of patients with insufficient efficacy and/or tolerability to triptans for the acute treatment of migraine: A systematic literature review | Leroux E, Buchanan A, Lombard L, Loo LS, Bridge D, Rousseau B, Hopwood N, Matthews B, Reuter U | Advances in Therapy, 37, 4765–4796 (October 2020) | View Publication | CNS/Neurology | Literature/landscape reviews |
| 2020.1 | Why & how to use time-to-event endpoints for COAs & how can the estimand framework help? | Lawrance R | Presented at ISOQOL, October 2020 | Psychometric evaluation and statistical analysis of COAs | ||
| 2020.1 | How to Assess and Interpret Measurement Properties and Change Over Time using Longitudinal Item Response Theory (LIRT) | Yang FM, Griffiths P, Trigg A, Bjorner J, Terluin B, Blanchin M | Symposia at ISOQOL , October 2020 | Psychometric evaluation and statistical analysis of COAs | ||
| 2020.1 | Making sense of sensors: Selecting, incorporating, and analyzing fit-for-purpose technologies for continuous data capture in clinical trials | Moderator: Pip Griffiths (Psychometrician, Adelphi Values) Presenting authors: Jennifer Goldsack: (Executive Director, DiME) “digital health” specialist perspective Jiat Poon/Nicki Bush: Industry/Sponsor perspective Paul O’Donohoe: (Scientific Lead, eCOA and mobile health, Medidata) Provider perspective/logistics Carrie Houts: (Director of Psychometrics, Vector Psychometric Group) Measurement Properties and Statistical considerations Discussant: Regulatory (Michelle Campbell) | Symposia at ISOQOL, October 2020 | Medical devices | Literature and COA instrument reviews | |
| 2020.1 | Patient perspectives on the benefit of a novel therapy for a rare disease: Using qualitative exit interviews to inform post-launch value messaging and to support shared treatment decision-making | Wells J, Vashi P, Gater A | Presented at ISOQOL, October 2020 | Rare diseases | Qualitative exit and in-trial interviews | |
| 2020.1 | Qualitative exit interviews with study clinical investigators to explore trial and treatment experience and feasibility of use in general clinical practice | Williamson N, Atkinson J, Bonner N, Arbuckle R, Tinsley K, Cooper C, Abraham L | Presented at ISOQOL, October 2020 | Qualitative exit and in-trial interviews | ||
| 2020.1 | Comparison of qualitative methods to explore key symptom and functional impact concepts of presbyopia: literature review, social media listening, and qualitative interviews | Findley A, Bentley S, Arbuckle R, Wolffsohn J, Naujoks C, Patalano F, sharma G, Kommineni J, Tyagi N, Chiva-Razavi S | Oral presentation at ISOQOL, October 2020 | Ophthalmology | Literature and COA instrument reviews | |
| 2020.1 | The Endometriosis Daily Diary: Modifying an Existing PRO for Endometriosis-Related Pain | Guan Y, Panter C, Wratten S, Randhawa S, Arbuckle R, Fauconnier A, Giudice L, Arbelaez F, Weaver J, Nguyen AM | Oral presentation at ISOQOL, October 2020 | Women's health | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification | |
| 2020.1 | COVID-19: Facilitating a paradigm shift in patient disease experience research | Wells J, Chandler D, Tatlock S | Poster presented at ISOQOL, October 2020 | Infectious diseases | Qualitative patient-centered research and evaluation of COAs | |
| 2020.1 | Qualitative study to understand the patient experience of knee osteoarthritis (OA) and assess the content validity of the Knee injury and Osteoarthritis Outcome Score (KOOS) and hip injury and Osteoarthritis Outcome Score (HOOS) measures | Wen-Hung C, Panter C, Park J, Mason B, Findley A, Arbuckle R, Svedsater H, Chauhan D | Poster presented at ISOQOL, October 2020 | Musculoskeletal diseases | Qualitative patient-centered research and evaluation of COAs | |
| 2020.1 | Novel use of creative elicitation tasks to further explore the patient experience of non-alcoholic steatohepatitis (NASH) | Williamson N, Tinsley K, McLeod E, Alkhouri N, Tolley C, Gater A, Harrington M | Oral Presentation at ISOQOL, October 2020 | Nephrology | Qualitative patient-centered research and evaluation of COAs | |
| 2020.09 | Literature review of patient-reported outcome measures in eating behaviour and evaluation for weight management trials | Von Huth Smith L, Galipeau N, Faerch L, Klooster B, Lopes S, Medrano P, Padilla B, Su S, Turner-Bowker DM | Poster presented at European and International Congress on Obesity, 1-4 September 2020 | Endocrinology/Metabolic diseases | Literature and COA instrument reviews | |
| 2020.08 | Estimating treatment effect on patient-reported outcomes subject to dropout: comparing traditional, contemporary and causal inference approaches | Trigg A, Roydhouse J | Oral presentation at ISOQOL, August 2020 | CNS/Neurology | Psychometric evaluation and statistical analysis of COAs | |
| 2020.06 | Understanding the Economic Burden of Treating Low-Grade Upper Tract Urothelial Cancer in the United States | Thacker K, Raman J, McLean T, Said J, Oliver L, Gore J | Urology Practice. 2020 Jun 9:10-97. | View Publication | Oncology | Treatment pathways/burden of illness |
| 2020.06 | The value of improved survival in acute myeloid leukaemia: understanding how physicians, patients, and their family members define quality of life | Russell N, LeBlanc T, Hernandez-Aldama L, Morgan L, Bell T, O'Hara L, Peloquin F, Healey J, Gater A, Welch V, Panter C, Amer K, Merino D, Hohman R, Brown A, Walter R, Horikoshi N, Maze D | Poster presented at European Hematology Association Meeting, June 2020 | View Publication | Oncology | Qualitative patient-centered research and evaluation of COAs |
| 2020.06 | Assessing the patient experience of lupus nephritis: development of a conceptual model and review of existing patient-reported outcome (pro) measures | Berry P, Burrows K, Hall R, Gater A, Bradley H, Ward A, Tolley C, DeLong P, Hsia EC | Poster presented at EULAR. June 2020. Annals of Rheumatic Diseases, 2020;79(Supp 1):1954-1955 | View Publication | Immunology | Qualitative patient-centered research and evaluation of COAs, Literature and COA instrument reviews |
| 2020.05 | Modelling the resource utilisation difference of using subcutaneous and intravenous administration of Rituximab within chemotherapy for the treatment of B-cell lymphoma | Hughes R, Swales O, Lucherini S | Value in Health vol. 23,1,S35-S36, May 2020 | View Publication | Oncology | Evidence synthesis/utility generation |
| 2020.05 | Clinical trials landscape for digital health interventions: A descriptive analysis | Braileanu G, Sa'id J, Higgins C, Rousseau B | Value in Health vol. 23,1,S250, May 2020 | View Publication | Cardiovascular, Endocrinology/Metabolic diseases | Literature/landscape reviews |
| 2020.05 | Targeted literature review (TLR) of the real-world treatment patterns and outcomes among MCRPC patients in the US | Shore N, Oliver L, Shui I, Gayle A, Wong O Y, Kim J, Payne S, Amin S, Ghate S | Value in Health vol. 23,1,S23, May 2020 | View Publication | Oncology | Literature/landscape reviews |
| 2020.05 | Understanding the economic burden of comorbidities associated with male hypogonadism: A cost model in England | Spencer C, Anstee K, Yeo S, Holl K, Wessinger-Grafenhahn U | Value in Health vol. 23,1,S152, May 2020 | View Publication | Men's health, Urology/Urogenital | Economic models, Treatment pathways/burden of illness |
| 2020.05 | Time based vs cycle-based approaches to account for patient-reported outcome (PRO) assessments in onoclogy trials | Lord-Bessen J, Pieters A, shaw J, DeRosa M, Taylor F, Lawrance R, Greenwood M | Poster presented at ISPOR, May 2020. Value in Health, 2020;23(1):S79-S80 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2020.05 | Uncovering Hidden Symptoms in Women with Endometriosis | Guan Y, Nguyen AM, Fauconnier A, Weaver J, Panter C, Wratten S, Randhawa S, Arbuckle R, Giudice L, Arbelaez F | Poster presented at Society of Endometriosis and Uterine Disorder Congress, May 2020 | Women's health | Qualitative patient-centered research and evaluation of COAs | |
| 2020.05 | A fork in the road: a mixed methods study exploring why older adults with acute myeloid leukemia choose different treatment paths | LeBlanc TW, Walter RB, Hernandez-Aldama L, Morgan L, Bell TJ, Panter C, Peloquin F, Healy J, Gater A, Welch VL, Amer K, O’Hara L, Hohman R, Brown A, Russell NH, Merino DM, Horikoshi D, Maze D | Poster presented at American Society of Clinical Oncology Meeting, May 2020 | View Publication | Oncology | Qualitative patient-centered research and evaluation of COAs |
| 2020.05 | Can wearable sensor technology support a paradigm shift in paediatric rare disease research? | Ollivier C, Griffiths P, Davies EH | Poster presented at European Conference on Rare Diseases and Orphan Products, May 2020 | View Publication | Pediatric care, Rare diseases, Medical devices | Psychometric evaluation and statistical analysis of COAs, Qualitative patient-centered research and evaluation of COAs |
| 2020.05 | Exploring the patient experience of chronic cough and mucus in COPD using qualitative methods | Keeley T, Kaur S, Tal-Singer R, Stott-Miller M, Morgan L, Miller BE, Gater A, Hall R | Poster presentation at American Thoracic Society International Conference, May 2020. American Journal of Respiratory and Critical Care Medicine, 2020;201:A5081 | View Publication | Respiratory diseases | Qualitative patient-centered research and evaluation of COAs |
| 2020.05 | Qualitative exploration of the patient experience of long-chain fatty acid oxidation disorders | Hall R, Kruger E, Bowden A, Cimms T, Skrinar A, Tinsley K, Gater A | Poster presented at ISPOR, May 2020. Value in Health, 2020;23(1):S342-S343 | View Publication | Endocrinology/Metabolic diseases | Qualitative patient-centered research and evaluation of COAs |
| 2020.05 | How are flares measured to evaluate treatment efficacy in rheumatic conditions? A review of FDA-approved drug labels | Galipeau N, Su S, Brova M, Severson K, Mazar I, Turner-Bowker, DM | Poster presentation at ISPOR, May 2020. Value in Health, 2020;23(SUPPLEMENT 1): S226. | View Publication | Musculoskeletal diseases | Literature and COA instrument reviews |
| 2020.05 | Health-related Quality of Life in Patients with Recurrent Pericarditis: Results from a Phase 2 Study of Rilonacept | Lin D, Klein AL, Cella D, Beutler A, Fang F, Magestro M, Cremer P, Lewinter MM, Luis SA, Abbate A, Ertel A, Litcher-Kelly L, Klooster B, Paolini J | Poster presented at Quality of Care & Outcomes Research Scientific Sessions, Reston, VA, May 15-16, 2020 | View Publication | Cardiovascular | Psychometric evaluation and statistical analysis of COAs |
| 2020.05 | Methodological advantages of SEM for responder definition | Sun X, Li X. | Poster presentation at ISPOR, May 2020. Value in Health, 2020;23(SUPPLEMENT 1): S251. | View Publication | Psychometric evaluation and statistical analysis of COAs | |
| 2020.05 | In between two worlds: Patient experiences in the transition from adolescent to young adult healthcare services and implications for health outcomes assessment | Turner-Bowker DM, K Chatterton, Mossman B, Yaworsky A, Krohe M | Poster presentation at ISPOR, May 2020. Value in Health, 2020;23(SUPPLEMENT 1): S255. | View Publication | Pediatric care | Literature and COA instrument reviews |
| 2020.03 | Understanding the patient experience of severe, recurrent, bilateral nasal polyps: A qualitative interview study in the United States and Germany | Hall R, Trennery C, Chan R, Gater A, Bradley H, Sikirica MV, Nelsen LM | Value in Health, 23(5): 632-641 | View Publication | Respiratory diseases | Qualitative patient-centered research and evaluation of COAs, Literature and COA instrument reviews |
| 2020.02 | Review of the real-world prevalence of a range of prostate cancer (PC) types (mHSPC, nmCRPC, mCRPC), and gene alterations in prostate cancer | Shore N, Oliver L, Shui I, Gayle A, Wong O Y, Kim J, Payne S, Ghate S | Presented at ASCO GU (Genitourinary) Cancers Symposium, February 2020. Journal of Clinical Oncology 2020 38:6_suppl, 229-229. | View Publication | Oncology | Literature/landscape reviews |
| 2020.02 | International standards for the analysis of quality-of-life and patient-reported outcome endpoints in cancer randomised controlled trials: recommendations of the SISAQOL Consortium | Coens C, Pe M, Dueck AC, Sloan J, Basch E, Calvert M, Campbell A, Cleeland C, Cocks K, Collette L, Devlin N | The Lancet Oncology; 21(2):e83-96 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2020.02 | Fabry disease patient-reported outcome-gastrointestinal (FABPRO-GI): a new Fabry disease-specific gastrointestinal outcomes instrument | Politei JM, Shields AL, Lamoureux RE, Taylor F, Zar-Kesslerc C, Barthd JA, Skuband N | Poster presentation at Annual WORLDSymposium, Orlando, FL, 10-13 February 2020 | Genetic diseases, CNS/Neurology | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Literature and COA instrument reviews | |
| 2020.01 | CheckMate 459: health-related quality of life in a randomized, multi-center Phase 3 study of nivolumab vs sorafenib as first-line treatment in patients with advanced hepatocellular carcinoma | Edeline J, Yau T, Park J, Kudo M, Han K, Mathurin P,Merle P, Finn RS, Mueller T, Taylor F, Greenwood M, Begic D, Tschaika M, Yip C, Pranschke E, Cocks K, Thompson G, Blum SI, Wisniewski T, Sangro B | Poster presented at Gastrointestinal Cancers Symposium, San Francisco, CA, 23-25 January 2020 | Oncology | Psychometric evaluation and statistical analysis of COAs | |
| 2020 | Efficacy and safety of biologics in psoriatic arthritis: A systematic literature review and network meta-analysis | Ruyssen-Witrand A, Perry R, Watkins C, Braileanu G, Kumar G, Kiri S, Nott D, Liu-Leage S, Hartz S, Sapin C | RMD Open 2020;6:e001117. doi: 10.1136/rmdopen-2019-001117 | View Publication | Musculoskeletal diseases, Immunology | Literature/landscape reviews, Evidence synthesis/utility generation |
| 2020 | Treatment options for dementia with lewy bodies: A network meta-analysis of randomised control trials | Tahami Monfared A, Desai M, Hughes R, Lucherini S, Yi Y, Perry R | Neurol Ther, 9, 521–534 (2020) | View Publication | CNS/Neurology | Evidence synthesis/utility generation |
| 2020 | What matters most? Different stakeholder perspectives on estimands for an invented case study in COPD | Keene ON, Ruberg S, Schacht A, Akacha M, Lawrance R, Berglind A, Wright D | Pharmaceutical Studies, 2020;19(4):370-387 | View Publication | Respiratory diseases | Psychometric evaluation and statistical analysis of COAs |
| 2020 | What is an estimand & how does it relate to quantifying the effect of treatment on patient-reported quality of life outcomes in clinical trials? | Lawrance R, Degtyarev E, Griffiths P, Trask P, Lau H, D'Alessio D, Griebsch I, Wallenstein G, Cocks K, Rufibach K | Journal of Patient Reported Outcomes, 2020;4:68, https://doi.org/10.1186/s41687-020-00218-5 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2020 | Minimally important differences for interpreting the EORTC QLQ-C30 in advanced colorectal cancer patients treated with chemotherapy | Musoro JZ, Samantha SC, Coens C, Pochesci A, Terada M, King MT, Sprangers MAG, Groenvold M, Cocks K, Velikova G, Flechtner HH, Bottomley A | Colorectal Cancer, 2020;22(12):2278-2287 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2020 | A novel, integrative approach for evaluating progression in Multiple Sclerosis: Development of a scoring algorithm | Tolley C, Piani-Meier D, Bentley S, Bennett B, Jones E, Pike J, Dahlke F, Tomic D, Ziemssen T | Journal of Medical Internet Research, 2020,8(4):e17592 | View Publication | CNS/Neurology | Psychometric evaluation and statistical analysis of COAs, Qualitative patient-centered research and evaluation of COAs |
| 2020 | A Physician-Completed Digital Tool for Evaluating Disease Progression (Multiple Sclerosis Progression Discussion Tool): Validation Study | Ziemssen T, Piani-Meier D, Bennett B, Johnson C, Tinsley K, Trigg A, Hach T, Dahlke F, Tomic D, Tolley C, Freedman MS | Journal of Medical Internet Research, 2020;22(9):e16932 | View Publication | CNS/Neurology | Psychometric evaluation and statistical analysis of COAs |
| 2020 | A mixed methods approach towards understanding key disease characteristics associated with the progression from RRMS to SPMS: Physicians' and patients' views | Ziemssen T, Tolley C, Bennett B, Kilgariff S, Jones E, Pike J, Tomic D, Piani-Meier D, Lahoz R | Multiple Sclerosis and Related Disorders, 2020;38:101861 | View Publication | CNS/Neurology | Qualitative patient-centered research and evaluation of COAs, Psychometric evaluation and statistical analysis of COAs, COA instrument development or modification |
| 2020 | Estimating EQ-5D Utilities for Cost-effectiveness Models Involving Immuno-oncology Treatments | Chaudhary MA, Sun X, Yuan Y, Varol N, Penrod JR | Value in Health, 2020;23(SUPPLEMENT 2): S438. | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2020 | Exploring and leveraging known resources to support pediatric clinical outcomes assessment (PedCOA) development | Krohe M, Lamoureux R, Banderas C, Turner-Bowker DM | Curr Pediatr Rev, 2020;16(3):232-240. | View Publication | Pediatric care | COA instrument development or modification |
| 2020 | Characterizing the use of clinical outcome assessments in approved gene therapy treatments | Ollis S, Dickie G, Volpi C, Turner-Bowker DM | Value in Health, 2020;23(SUPPLEMENT 1): S20. | View Publication | Genetic diseases | Literature and COA instrument reviews |
| 2020 | How to ignite the estimand discussion and apply the “estimand” language to PROs in clinical trials | Lawrance R, Degtyarev E, Rufibach K | Value in Health, 2020;23(2): S616. | Psychometric evaluation and statistical analysis of COAs | ||
| 2020 | Development and Content Validation of Pruritus and Symptoms Assessment for Atopic Dermatitis (PSAAD) in Adolescents and Adults with Moderate-to-Severe AD | Hall R, Lebwohl MG, Bushmakin AG, Simpson EL, Gooderham MJ, Wollenberg A, Gater A, Wells JR, Cappelleri JC, Hsu M-A, Papacharalambous J, Peeva E, Tallman AM, Zhang W, Chen L | Dermatology and Therapy, 2020;11:221-233 | View Publication | Dermatology, Pediatric care | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs |
| 2020 | Short bowel syndrome and the impact on patients and their families: a qualitative study | Sowerbutts AM, Panter C, Dickie G, Bennett B, Ablett J, Burden S, Lal S | Journal of Human Nutrition and Dietetics, 2020;33(6):767-774 | View Publication | Rare diseases, Gastroenterology | Qualitative patient-centered research and evaluation of COAs |
| 2020 | Patients’ experiences of Parkinson’s disease: a qualitative study in glucocerebrosidase and idiopathic Parkinson’s disease | Bonner N, Bozzi S, Morgan L, Peterschmitt MJ, Fischer TZ, Arbuckle R, Reaney M | The Journal of Patient Reported Outcomes, 2020;4:65 | View Publication | CNS/Neurology | Qualitative patient-centered research and evaluation of COAs |
| 2020 | Qualitative Interviews to Better Understand the Patient Experience and Evaluate Patient-Reported Outcomes (PRO) in RLBP1 Retinitis Pigmentosa (RLBP1 RP) | Green J, Tolley C, Bentley S, Arbuckle R, Burstedt M, Whelan J, Holopigian K, Stasi K, Sloesen B, Spera C, Deslandes J-Y, Mullins A | Advances in Therapy, 2020;37:2884-2901 | View Publication | Ophthalmology | Qualitative patient-centered research and evaluation of COAs |
| 2020 | Minimally important differences for interpreting European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 scores in patients with head and neck cancer | Musoro JZ, Coens C, Singer S, Tribius S, Oosting SF, Groenvold M, Simon C, Machiels J-P, Gregoire V, Velikova G, Cocks K, Sprangers MAG, King MT, Bottomley A | Head and Neck, 2020;42(11):3141-3152 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2020 | Longitudinal health-related quality of life in first-line treated patients with chronic lymphocytic leukemia: results from the Connect® CLL Registry | Sharman JP, Cocks K, Nabhan C, Lamanna N, Kay NE, Grinblatt DL, Flowers CR, Davids MS, Kiselev P, Swern AS, Sullivan K, Gharibo MM, Flick ED, Trigg A, Mato A | ejHaem, 2020,1(1):188-198 | View Publication | Hematology | Psychometric evaluation and statistical analysis of COAs |
| 2020 | Social Media Listening to Understand the Lived Experience of Presbyopia: Systematic Search and Content Analysis Study | Wolffsohn JS, Leteneux-Pantais C, Chiva-Razavi S, Bentley S, Johnson C, Findley A, Tolley C, Arbuckle R, Kommineni J, Tyagi N | Journal of Medical Internet Research, 2020;22(9):e18306 | View Publication | Ophthalmology | Literature and COA instrument reviews |
| 2020 | Development of a Patient-Reported Outcome Questionnaire to Evaluate Primary Mitochondrial Myopathy Symptoms: The Primary Mitochondrial Myopathy | Gwaltney C, Stokes J, Aiudi A, Mazar I, Ollis S, Love E, Espensen A, Shields AL | J Clin Neuromuscul Dis, 2020;22(2): 65-76. | View Publication | Genetic diseases, Rare diseases, Musculoskeletal diseases | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2020 | Comparison of three histologic indices in ulcerative colitis: Evaluation from the Phase 2 study of upadacitinib (U-ACHIEVE) | Jairath V, Lee WJ, Zhou W, Heap G, Butler J, Shields AL, Ollis S, Harpaz N | Poster presented at 15th Congress of European Crohn's and Colitis Organisation, Vienna, Austria, February 12-15, 2020. Journal of Crohn's and Colitis, 2020;14(1): S210–S211. | View Publication | Gastroenterology, Immunology | Psychometric evaluation and statistical analysis of COAs |
| 2020 | A Dictionary-Based Text Mining Approach for Identifying Patient-centric Symptoms from Patient Interviews. | Li X, DeRosa M, Padilla B, Banderas B, Duluc L | Oral presentation at ISOQOL, 2020 | Qualitative patient-centered research and evaluation of COAs | ||
| 2020 | Factors driving patient preferences for growth hormone deficiency (GHD) injection regimen and injection device features: A discrete choice exercise | McNamara M, Turner-Bowker DM, Westhead H, Yaworsky A, Palladino A, Gross H, Pleil A, Loftus J | Patient Prefer Adherence, 2020; 14: 781–793. | View Publication | Endocrinology/Metabolic diseases | Patient preference research |
| 2020 | First-Line (1L) Nivolumab (NIVO) + Ipilimumab (IPI) in Advanced Non-Small Cell Lung Cancer (NSCLC): Patient-Reported Outcomes (PROs) in CheckMate 227 Part 1. | Reck M, Ciuleanu TE, Lee J-S, Schenker M, Audigier-Valette C, Zurawski B, Linardou H, Otterson G, Salman P, Nishio M, De la Mora Jimenez E, Leśniewski-Kmak K, Yuan Y, Blum S, Nathan F, Sun X, Moreno-KoehlerA, Taylor F, O'Byrne K | Poster presented at European Lung Cancer Congress, Geneva, Switzerland, April 15-18 2020. | Oncology | Psychometric evaluation and statistical analysis of COAs | |
| 2020 | Psychometric Evaluation of the Indolent Systemic Mastocytosis Symptom Assessment Form (ISM-SAF) in patients with Indolent Systemic Mastocytosis. | Taylor F, Akin C, Shields AL, Li S, Mar B, Oren R, McDonald J, Padilla B, Lin HM, Green T, Lee P, Siebenhaar F | Poster presentation at ISOQOL, 2020 | Rare diseases | Psychometric evaluation and statistical analysis of COAs | |
| 2020 | Development and content validation of the Pediatric Oral Medicines Acceptability Questionnaires (P-OMAQ): patient-reported and caregiver-reported outcome measures | Turner-Bowker DM, An Haack K, Krohe M, Yaworsky A, Vivas N, Kelly M, Chatterjee G, Chaston E, Mann E, Reaney M | J Patient Rep Outcomes, 2020;4(1): 80. | View Publication | Pediatric care | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2020 | Development and psychometric evaluation of the Life Interference Questionnaire for Growth Hormone Deficiency (LIQ-GHD) to assess growth hormone injection burden in children and adults | Turner-Bowker DM, Yaworsky A, Palladino A, Lamoureux RE, Kelly M, Love E, Pleil A, Shields A, Loftus J | The Patient - Patient-Centered Outcomes Research, 2020;13: 289–306. | View Publication | Endocrinology/Metabolic diseases, Pediatric care | Psychometric evaluation and statistical analysis of COAs, Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs |
| 2019.12 | Treatment decision making in AML: Factors of importance to clinicians, AML patients and their family | LeBlanc TW, Walter RB, Hernandez-Aldama L, Sully K, Bell TJ, Johnson C, Peloquin F, Gater A, Welch VL, O'Hara L, Hohman R, Merino D, Russell NH, Horikoshi N, Maze D | Poster presented at American Society of Hematology Annual Meeting, December 2019. Blood, 2019;134(Supp 1)3498 | View Publication | Oncology | Qualitative patient-centered research and evaluation of COAs |
| 2019.12 | The Psychometric Properties of the ITP Life Quality Index Assessed in a Large Multinational “Real-World” Cohort of Immune Thrombocytopaenia Patients | Viana R, D'Alessio D, Griffiths P, Bonner N, Grant L | Oral presentation at American Society of Hematology Annual Meeting, December 2019. Blood, 2019;134(Supp 1):386 | View Publication | Hematology | Psychometric evaluation and statistical analysis of COAs |
| 2019.12 | Health-Related Quality-of-Life Outcomes in Patients With Classical Hodgkin Lymphoma: A Prospective, Observational Study in US Oncology Practices. | Svoboda J, Armand P, Taylor F, Sun X, Moreno-Koehler A, Gajavelli S, Peterson D, Chen C | Presented at 61st ASH Annual Meeting and Exposition, Orland, FL, December 7-10, 2019. Blood, 2019;134(Supplement 1): 2192. | View Publication | Oncology | Qualitative patient-centered research and evaluation of COAs |
| 2019.11 | Understanding the pricing and reimbursement (P&R) landscape of orphan drugs in emerging markets | Oliver L, Karakusevic A, Enstone A, Rousseau B | Poster presented at ISPOR, November 2019. Value in Health vol. 22,3,S860-861 | View Publication | Rare diseases | Literature/landscape reviews |
| 2019.11 | Social media and vaccine hesitancy: Focus on MMR | Farrington E, Lavelle P | Poster presented at ISPOR, November 2019. Value in Health vol. 22,3,S661 | View Publication | Infectious diseases, Vaccines | Literature/landscape reviews |
| 2019.11 | Understanding the humanistic burden and patient impact in non-alcoholic steatohepatitis (NASH) | Oliver L, Tavella F, Rousseau B | Poster presented at ISPOR, November 2019. Value in Health vol. 22,3,S590-591 | View Publication | Hepatology | Treatment pathways/burden of illness |
| 2019.11 | Evaluating the economic and humanistic burden of type 2 diabetes mellitus in emerging markets compared to established markets | Anstee K, Oldham D, Landels H, Rousseau B | Poster presented at ISPOR, November 2019. Value in Health vol. 22,3,S574 | View Publication | Endocrinology/Metabolic diseases | Literature/landscape reviews |
| 2019.11 | Targeted literature review into methods of determining patients' preference for treatment type in diabetes | Collings H, Wyn R, Tavella F | Poster presented at ISPOR, November 2019. Value in Health vol. 22,3,S591 | View Publication | Endocrinology/Metabolic diseases | Literature/landscape reviews |
| 2019.11 | Exploring pre and post Agenzia Italiana Del Farmaco (AIFA) reimbursed access to immunotherapy for the treatment of squamous cell carcinoma of the head and neck (SCCHN) | Wellam H, Pepper K, Silvey M, Middleton C, Rider A, Piercy J | Poster presented at ISPOR, November 2019. Value in Health vol. 22,3,S490 | View Publication | Oncology | HTA/reimbursement |
| 2019.11 | Interregional inequality in Italian healthcare delivery affects choice of selective estrogen receptor modulators (SERMS) for the treatment of hormone-receptor-positive breast cancer | Wellam H, Pepper K, Silvey M, Rider A, Piercy J | Poster presented at ISPOR, November 2019. Value in Health vol. 22,3,S489 | View Publication | Oncology | Literature/landscape reviews |
| 2019.11 | Use of cost-effectiveness affordability curves in evaluating cancer drugs in England | Yi Y, Lucherini S | Poster presented at ISPOR, November 2019. Value in Health vol. 22,3,S462 | View Publication | Oncology | Economic models |
| 2019.11 | Incorporating the patients' perspective in economic evaluations of healthcare | Jamadar F, Yi Y, Lucherini S, Heron L | Poster presented at ISPOR, November 2019. Value in Health vol. 22,3,S772 | View Publication | Literature/landscape reviews, Evidence synthesis/utility generation, Access/HEOR consultancy | |
| 2019.11 | Evaluation of the impact of alternative drug pricing strategies used on the budget impact and cost-effectiveness for products with multiple indications | Smyrnaios C, Hughes R, Yi Y, Lucherini S | Poster presented at ISPOR, November 2019. Value in Health vol. 22,3,S771-772 | View Publication | Economic models | |
| 2019.11 | An economic evaluation of the hospital resourcing implications for the treatment of adverse events | Hughes R, Hernani M, Lucherini S, Heron L | Poster presented at ISPOR, November 2019. Value in Health vol. 22,3,S770 | View Publication | Oncology | Economic models |
| 2019.11 | Systematic literature review of intravenously administered oncology therapies for which a subcutaneous formulation has also been developed | Schenkel B, Wu E, McBride A, Hernani M, Wyn R, Kornalska K | Poster presented at the Society for Immunotherapy of Cancer (SITC) meeting, November 2019 | Oncology | Literature/landscape reviews | |
| 2019.11 | Development and First Use of the Patient’s Qualitative Assessment of Treatment (PQAT) Questionnaire in Type 2 Diabetes Mellitus to Explore Individualised Benefit–Harm of Drugs Received During Clinical Studies | Gater A, Reaney M, Findley A, Brun-Strang C, Burrows K, Nguyen-Pascal M-L, Roborel de Climens A | Drug Safety; 43: 119-134 | View Publication | Endocrinology/Metabolic diseases | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2019.11 | Psychometric evaluation of a modified visual function questionnaire (mvfq-25) using data from a phase iii open-label randomized controlled trial in patients with inherited retinal dystrophy caused by biallelic rpe65 mutations | Viriato D, Spera C, Williamson N, Tolley C, Arbuckle R, Bennett J | Poster presented at ISPOR, November 2019. Value in Health, 2019;22(Supp 3):S869 | View Publication | Ophthalmology | Psychometric evaluation and statistical analysis of COAs |
| 2019.11 | What do we know about patients' and caregivers' experience when living with the hereditary retinal condition retinitis pigmentosa | Banhazi J, Williamson N, Bradley H, Exall E, Naujoks C, Spera C, Green J, Fischer MD, Audo I, Kay C, Viriato D | Poster presented at ISPOR, November 2019. Value in Health, 2019;22(Supp 3):S865 | View Publication | Ophthalmology, Pediatric care | Qualitative patient-centered research and evaluation of COAs |
| 2019.11 | Methods and considerations for the development, content validity testing, and evaluation of patient education tools (PETS) | Bentley S, Johnson C, Exall E, Lawrance R, Brohan E | Poster presented at ISPOR, November 2019. Value in Health, 2019;22(Supp 3):S827 | View Publication | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification | |
| 2019.11 | Illness-related stigma: conceptual and measurement considerations for patient centered assessment in interventional contexts | Brohan E, Chan EKH | Poster presented at ISPOR, November 2019. Value in Health, 2019;22(Supp 3):S730 | View Publication | Infectious diseases | Literature and COA instrument reviews |
| 2019.11 | Indirect comparison of HRQOL data for patients with treatment-refractory metastatic colorectal cancer treated with trifluridine/tipiracil (preconnect trial) compared with best-supportive care and regorafenib (correct trial) | Moreno SG, Greenwood M, Cocks K, Sun X, Becquart M, Vidot L, Mounedji N, Falcone A, Taieb J, Wyrwicz L | Poster presented at ISPOR, November 2019. Value in Health, 2019;22(Supp 3):S444-S445 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2019.11 | Understanding the role of anchor correlations in the calculation of meaningful change thresholds for health-related quality of life research | Griffiths P, Williams A, Brohan E, Ccocks K | Poster presented at ISPOR, November 2019. Value in Health, 2019;22(Supp 3):S826 | View Publication | Psychometric evaluation and statistical analysis of COAs | |
| 2019.11 | Comparison of generic and condition-specific preference measures to derive health utilities: a retrospective analysis of nivolumab trials in solid tumours | Shaw JW, Bennett B, DeRosa M, Taylor F, Kiff C, Ntais D, Noon K, King MT, Cocks K | Oral Presentation at ISPOR, November 2019. Value in Health, 2019;22(Supp 3):S922 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2019.11 | The SISAQOL initiative: establishing international standards and recommendations for the analysis of patient-reported outcomes and quality of life data in oncology randomized clinical trials | Dorme L, Pe M, Coens C, Basch E, Calvert M, Campbell A, Cleeland C, Cocks K, Collette L, Devlin N, Dueck AC, Flechtner HH, Gotay C, Griebsch I, Groenvold M, Johnson LL, King M, Kluetz PG, Koller M, Malone DC, Martinelli F, Mitchell SA, Musoro J, O’Connor D, Oliver K, Piault-Louis E, Piccart M, Quinten C, Reijneveld JC, Schürmann C, Sloan J, Wilder Smith A, Soltys K, Sridhara R, Taphoorn MJB, Velikova G, Bottomley A | Poster presented at ISPOR, November 2019. Value in Health, 2019;22(Supp 3):S525 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2019.11 | Qualitative concept elicitation interviews to understand the patient experience of glucocerebrosidase-parkinson’s disease (gba-pd) | Bonner N, Bozzi S, Morgan L, Mason B, Peterschmitt J, Fischer T, Arbuckle R, Reaney M | Poster presented at ISPOR, November 2019. Value in Health, 2019;22(Supp 3):S759 | View Publication | CNS/Neurology | Qualitative patient-centered research and evaluation of COAs |
| 2019.11 | Confirmatory psychometric validation of the brief pain inventory (BPI-SF) in adult X-linked hypophosphatemia (XLH) | Skrinar A, Theodore-Oklota C, Bonner N, Arbuckle R, Williams A, Nixon A | Poster presented at ISPOR, November 2019. Value in Health, 2019;22(Supp 3):S870 | View Publication | Genetic diseases, Hematology | Psychometric evaluation and statistical analysis of COAs |
| 2019.11 | Psychometric performance of plaque psoriasis patient reported outcome numeric rating scales in a Phase 2b clinical trial | Banderas B, Lizzul P, Ahluwalia G, Liu C, Kinchev P, Stroehmann D, Li S, Galipeau N, Mossman B, McDonald J, Shields A | Poster presented at ISPOR, November 2019. Value in Health, 2019;22(SUPPLEMENT 3): S911. | View Publication | Dermatology | Psychometric evaluation and statistical analysis of COAs |
| 2019.11 | Factors influencing agreement between patient and clinician assessments of severity in chronic plaque psoriasis | DeRosa M, Yip C, Banderas B, Foley C | Poster presented at ISPOR, November 2019. Value in Health, 2019;22(SUPPLEMENT 3): S890. | View Publication | Dermatology | Psychometric evaluation and statistical analysis of COAs |
| 2019.11 | Using the patient voice to capture the clinical relevance of the 9-Hole Peg Test in individuals with Friedreich ataxia. | Farmer J, Sen R, Hoffman D, Shah A, Mazar I, Wang H, Banderas B, Kelly M, Mossman B, Brova M, Corben L | Poster presented at International Ataxia Research Conference, Washington DC, November 13-19, 2019 | Genetic diseases, Rare diseases, CNS/Neurology | Qualitative patient-centered research and evaluation of COAs | |
| 2019.11 | Predictors of agreement between patient and clinician global assessments of rheumatoid arthritis severity | Foley C, Yip C, Banderas B, DeRosa M | Poster presented at ISPOR, November 2019. Value in Health, 2019;22(SUPPLEMENT 3): S706. | View Publication | Musculoskeletal diseases, Immunology | Psychometric evaluation and statistical analysis of COAs |
| 2019.11 | Is there a systematic methodology for choosing trial endpoints that incorporates patients’ perspectives? What might it look like? | Shields AL, Powers JH, Stone AA | Workshop presented at ISPOR, November 2019. | Literature and COA instrument reviews | ||
| 2019.11 | Psychometric performance of the Indolent Systemic Mastocytosis Symptom Assessment Form (ISM-SAF) | Shields AL, Taylor F, Lamoureux R, Padilla B, Severson K, Green T, Mar B | Poster presented at ISPOR, November 2019. Value in Health, 2019;22(SUPPLEMENT 3)S867-S868. | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2019.11 | Psychometric Evaluation of the Advanced Systemic Mastocytosis Symptom Assessment Form (AdvSM-SAF) in patients with Advanced Systemic Mastocytosis | Taylor F, Shields A, Li S, Yip C, Padilla B, Green T, Radia D, Deininger M, Gotlib JR, Bose P, Drummond MW, Hexner E, Robinson W, Quiery A, Winton EF, DeAngelo DJ, Mar B | Poster presented at ISPOR, November 2019. Value in Health, 2019;22(SUPPLEMENT 3): S868. | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2019.11 | Patient characteristics associated with greater hidradenitis suppurativa severity agreement between patient and clinician global assessments | Yip C, Banderas B, DeRosa M, Foley C. | Poster presented at ISPOR, November 2019. Value in Health, 2019;22(SUPPLEMENT 3): S866. | View Publication | Dermatology | Psychometric evaluation and statistical analysis of COAs |
| 2019.1 | A qualitative literature and instrument review and qualitative interviews with adult chronic hand eczema (CHE) patients and expert dermatologists | Grant L, Seiding Larsen L, Burrows K, Belsito DV, Weisshaar E, Diepgen T, Hahn-Pedersen J, Sørensen OE, Arbuckle R | Poster presented at European Academy of Dermatology and Venereology Conference, October 2019 | Dermatology | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs | |
| 2019.1 | The patient experience of chronic hand eczema: a conceptual model | Burrows K, Larsen LS, Grant L, Besito DV, Weisshar E, Diepgen T, Hahn-Pedersen J, Sorensen OE, Arbuckle R | Poster presented at 28th Congress of the European Academy of Dermatology and Venereology, October 2019 | Dermatology | Qualitative patient-centered research and evaluation of COAs | |
| 2019.1 | Symposium 3: Tell me more: qualitative methods for eliciting supplementary data regarding patient experiences during clinical trials and observations studies. Workshop: Development of a patient-reported questionnaire to measure patient experiences of participating in clinical trials | De Climens AR, Burrows K, Findley A, Gater A | Symposia presented at ISOQOL, October 2019 | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification | ||
| 2019.1 | Symposium 3: Tell me more: qualitative methods for eliciting supplementary data regarding patient experiences during clinical trials and observations studies. Workshop: Listening to the patient: the aplication and valid of qualitative research for gathering patient insights during drug development and evaluation | Gater A, Tatlock S, Arbuckle R | Symposia presented at ISOQOL, October 2019 | Qualitative patient-centered research and evaluation of COAs | ||
| 2019.1 | Symposium 3: Tell me more: qualitative methods for eliciting supplementary data regarding patient experiences during clinical trials and observations studies. Workshop: "Was it worth it?": Use of the Patient’s Qualitative Assessment of Treatment (PQAT) to explore direct patients’ experience of drugs received during clinical studies | Manson S, Bonner N, Gater A | Symposia presented at ISOQOL, October 2019 | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification | ||
| 2019.1 | Symposium 6: Partnering with patients and caregivers in patien centered outcomes research: challenges and solutions. Workshop: Engagement of a Patient Advisory Group as partners to guide the design, conduct and interpretation of concept elicitation and cognitive debriefing interviews during Patient-Reported Outcome research studies | Panter C, Arbuckle R, Tatlock S | Symposia presented at ISOQOL, October 2019 | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification | ||
| 2019.1 | Considering adolescents as a unique age group: implications for the development, validation and implementation of patient-reported outcomes (PROs) in adolescents | Panter C, Trennery C, Burrows K, Mason B, Ward A, Arbuckle R | Poster presented at ISOQOL, October 2019 | Pediatric care | Literature and COA instrument reviews | |
| 2019.1 | Symposium 4: Novel approaches and solutions to the challenges of measuring health-related domains and concepts across children of a range of ages. Workshop: Innovative pediatric Clinical Outcome Assessment (COA) administration and reporting strategies | Turner-Bowker DM, Loftus J, Yaworsky A, Krohe M, Radin A, Palladino A, Mastey V, Nadeau KC, Kelly M, Lamoureux R, Padilla B, Love E, Chaston E, Jalbert J | Symposia presented at ISOQOL, October 2019 | Pediatric care | Literature and COA instrument reviews | |
| 2019.1 | Symposium 3: Tell me more: qualitative methods for eliciting supplementary data regarding patient experiences during clinical trials and observations studies. Workshop: Challenges, considerations and solutions for implementation of qualitative interviews within clinical research studies: learnings from applications in a range of therapeutic areas | Von Maltzahn R, Bonner N, Williamson N, Gater A, Nelsen | Symposia presented at ISOQOL October 2019 | Qualitative exit and in-trial interviews | ||
| 2019.1 | A Mixed Methods Approach to Generate Meaningful Change Estimates EORTC QLQ-MY20 | Yucel E, Sully K, Trigg A, Bonner N, Shah N, Panjabi S, Cocks K | Poster presented at ISOQOL, October 2019 | Oncology | Qualitative patient-centered research and evaluation of COAs, Psychometric evaluation and statistical analysis of COAs | |
| 2019.1 | Agreement of Daily and Weekly Mean Scores in a Chronic Plaque Psoriasis Population in a Phase 2 Clinical Trial | Banderas B, Lizzul P, Mcdonald J, Galipeau N, Mossman B, Li S, Ahluwalia G, Kinchev P, Liu C, Stroehmann D, Shields A | Poster presented at ISOQOL, October 2019 | Dermatology | Psychometric evaluation and statistical analysis of COAs | |
| 2019.1 | Establishing clinical meaningfulness of the 9-Hole Peg Test in the measurement of upper limb impairment in individuals with Friedreich’s Ataxia: A qualitative interview study | Farmer J, Sen R, Hoffman D, Shah A, Mazar I, Wang H, Banderas B, Kelly M, Mossman B, Brova M, Corben L | Poster presented at ISOQOL, October 2019 | Genetic diseases, Rare diseases, CNS/Neurology | Qualitative patient-centered research and evaluation of COAs | |
| 2019.1 | Development of a Patient Reported Outcome (PRO) Questionnaire To Assess the Symptoms of Eosinophilic Gastritis and Gastroenteritis (EG/EGE-SQ) | Hirano I, Dellon ES, Murray J, Peterson KA, Banderas B, Woolley JM, Ollis S, Foley C, Love E, Shields A, Shaw C, Rasmussen HS | Poster presented at American College of Gastroenterology Annual Scientific Meeting and Postgraduate Course, San Antonio, TX USA, October 25-30, 2019. The American Journal of Gastroenterology, 2019;114:694-S695. | View Publication | Gastroenterology | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2019.09 | Using PROs in clinical trials: what I know about "estimands"? | Lawrance R, Griffiths P, Degtyarev E, Rufibach K, Cocks K | Oral Presentation at ISOQOL, September 2019 | Psychometric evaluation and statistical analysis of COAs | ||
| 2019.09 | What a difference a day makes: Assessing the impact of Daily Diary completion thresholds on psychometric properties and treatment effects | Griffiths P, Gater A, Brohan E, Cocks K | Poster presented at ISOQOL, September 2019 | Psychometric evaluation and statistical analysis of COAs | ||
| 2019.09 | Methods, value and application of Dephi panels in rare disease populations: a case study overview | Williamson N, Grimes R, Bonner N | Poster presented at ISOQOL, September 2019 | Rare diseases | Qualitative patient-centered research and evaluation of COAs | |
| 2019.09 | Evaluation of content validity of the Near Activity Visual Questionnaire-Presbyopia (NAVQ-P) in presbyopia subjects | Kilgariff S, Naujoks C, Johnson C, Patalano F, Findley A, Tolley C, Arbuckle R, Wolffsohn JS, Sharma G, Chiva-Razavi S | Poster presented at ISOQOL, September 2019 | Ophthalmology | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification | |
| 2019.09 | Moving the interpretation of PRO scores forward: MIDs etcl! | Cocks K, Devji T, Terluin B, Norman G | Symposium presented at ISOQOL, September 2019 | Psychometric evaluation and statistical analysis of COAs | ||
| 2019.09 | Establishing anchor-based minimally important differences (MID) for the EORTC QLQ-C30 scales across multiple cancer sites | Musoro JZ, Coens C, King MT, Sprangers MAG, Groenvold M, Cocks K, Velikova G, Singer S, Oosting SF, Brandberg Y, Pochesci A, Stelmes J-J, Frederic F, Katarzyna P, Fatima C, Reijneveld JC, Dirven L, Taphoorn MJB, Greimel E, Nordin A, van Dorst EBL, A Bottomley on behalf of the EORTC Melanoma, Breast, Head and Neck, Genito-urinary, Gynecological, Gastro-intestinal, Brain and Quality of Life Groups | Poster presented at ISOQOL, September 2019 | Oncology | Psychometric evaluation and statistical analysis of COAs | |
| 2019.09 | Testing the validity of the Canine Dermatitis Quality of Life and Treatment Satisfaction Questionnaire (CDQOL-TSQ) through correlations with other measures | Noli C, Wright A, Wells JR, Griffiths P, Brohan E | Oral presentation at European Veterinary Dermatology Conference, September 2019 | Animal health, Dermatology | COA instrument development or modification | |
| 2019.09 | Is the canine dermatitis quality of life and treatment satisfaction questionnaire (CDQOL-TSQ) sensitive to differences in disease severity? | Wright AK, Wells JR, Griffiths P, Brohan E | Poster presented at European Veterinary Dermatology Conference, September 2019 | Animal health, Dermatology | Psychometric evaluation and statistical analysis of COAs | |
| 2019.08 | Patient-centered insights on treatment decision-making and living with acute myeloid leukemia and other hematologic cancer | Crawford R, Sully K, Rushton R, Johnson C, Doward L, Bell T, Welch V, Peloquin F, Gater A | The Patient; 13:83-102 | View Publication | Oncology | Literature and COA instrument reviews |
| 2019.06 | Budget projections and health impact of the PD-1/PD-L1 inhibitors to inform budget planning – the experience from four European countries | Roediger A, van Bavel J, Pellissier J, Lucherini S, Davies N, Okhuoya P, Rachev B | Poster presented at HTAi, June 2019 | Oncology | Economic models, Evidence synthesis/utility generation | |
| 2019.06 | Towards standardization of patient-reported {PRO) data analysis in cancer randomized controlled trials: the SISAQOL initiative | Coens C, Pe M, Basch E, Calvert M, Campbell A, Cleeland C, Cocks K, Collette L, Devlin N, Dorme L, Dueck AC, Flechtner H-H, Gotay C, Greimel E, Griebsch I, Groenvold M, Hamel J-F, Johnson LL, King M, Kluetz PG, Koller M, Malone DC, Martinelli F, Mitchell SA, Musoro JZ, O'Connor D, Oliver K, Piault-Louis E, Piccart M, Pimentel FL, Quinten C, Reijneveld JC, Schurmann C, Sloan J, Wilder Smith A, Soltys KM, Sridhara R, Taphoorn MJB, Velikova G, Bottomley A | Presentation at PSI, June 2019 | Oncology | Psychometric evaluation and statistical analysis of COAs | |
| 2019.06 | Use of web-based surveys for the administration of patient-reported outcome measures (PROMs) | Panter C, Bradley H, Tinsley K | Rapid Review at PROMs, June 2019 | Qualitative patient-centered research and evaluation of COAs | ||
| 2019.06 | Using statistical study design concepts in the evaluation of patient education tools | Johnson C, Kilgariff S, Exall E, Brohan E, Lawrance, R | Poster presented at PROMs, June 2019 | Psychometric evaluation and statistical analysis of COAs | ||
| 2019.06 | Patient-reported quality of life (QoL) of advanced melanoma patients in a Phase 3 study of nivolumab (NIVO) with or without ipilimumab (IPI) versus IPI: CheckMate 067 4-year data | Schadendorf D, Larkin JMG, Wolchok JD, Chiarion-Sileni V, Taylor F, Lawrance R, Moreno-Koehler A, Lord-Bessen J, Rizzo JI, Moshyk A, Kotapati S, Hodi FS | Oral presentation at 9th European Post-Chicago Melanoma/Skin Cancer Meeting, June 2019. Journal of Clinical Oncology; 2019;37(15):9551 | View Publication | Dermatology, Oncology | Qualitative patient-centered research and evaluation of COAs, Psychometric evaluation and statistical analysis of COAs |
| 2019.06 | Qualitative research to explore the patient and caregiver-reported experience of symptoms and impacts in spinal muscular atrophy (SMA) Types 2 and 3 – the development of a conceptual model | Trundell D, Hall R, Ramsey D, Kaur S, Braid J, Tinsley K, Arbuckle R, Jethwa S, Belter L, Cruz R, Hobby K, Jarecki J, Bowyer K, Dabbous O, Johnson K, Staunton H, Schwerzsenz I, Gusset N, Gorni K | Poster presented at 23rd Cure SMA Research Meeting, June 2019 | Rare diseases, Genetic diseases, Musculoskeletal diseases | Qualitative patient-centered research and evaluation of COAs | |
| 2019.06 | Concept elicitation interviews to understand the visual function symptoms and functional impacts of presbyopia | Wolffsohn JS, Findley A, Patalano F, Naujoks C, Sharma G, Arbuckle R, Bentley S, Barnes E, Chiva-Razavi C | ePoster presented at World Ophthalmology Congress, June 2019 | Ophthalmology | Qualitative patient-centered research and evaluation of COAs | |
| 2019.06 | The lived experience of nasal polyps - the current understanding of the patients' perspective | Hall R, Trennery C, Gater A, Bradley H, Sikirica M, Nelsen LM, Evitt LA | Poster presented at EAACI 2019, June 2019 | Respiratory diseases | Qualitative patient-centered research and evaluation of COAs | |
| 2019.06 | Novel patient centric approach to understand the patient experience of nasal polyps | Hall R, Trennery C, Gater A, Bradley H, Sikirica M, Nelsen LM, Evitt LA | Poster presented at EAACI 2019, June 2019 | Respiratory diseases | Qualitative patient-centered research and evaluation of COAs | |
| 2019.06 | Development of Clinical Global Impression of Change (CGI-C) and Caregiver Global Impression of Change (CaGI-C) measures for ambulatory Duchenne Muscular Dystrophy (DMD) | Staunton H, Trennery, C, Arbuckle, A, Guridi M, Zhuravleva, Hall R | Poster presented at Parent Project Muscular Dystrophy, June 2019 | Musculoskeletal diseases | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification | |
| 2019.06 | EPO3219: Validation of the scoring algorithm for a novel integrative MS progression discussion tool | Ziemssen T, Piani-Meier D, Bennett B, Johnson C, Tinsley K, Trigg A, Dahlke F, Tomic D, Tolley C, Freedman M | Poster presented at European Academy of Neurology, June 2019. Neurology, 2019;92(15):P3.2-011 | View Publication | CNS/Neurology | Psychometric evaluation and statistical analysis of COAs |
| 2019.06 | A strategy for the measurement of sickle cell disease symptoms from the patient | Ojo F, Litcher-Kelly L, Mazar I, Klooster B, Roeder A, Chaston E, Ollis S, Treadwell M, Reasner D | Poster presented at 24th Congress of the European Hematology Association, Amsterdam, Netherlands, June 13-16 2019. Blood, 2019;132(Supplement 1): 3571. | View Publication | Hematology, Genetic diseases | Qualitative patient-centered research and evaluation of COAs, Literature and COA instrument reviews |
| 2019.06 | Perspectives of clinicians on the symptom experiences of patients: Are we getting it right? | Roeder A, Love E, Mazar I, Turner-Bowker D, Severson K | Poster presented at RARE Drug Development Symposium, Philadelphia, PA, June 6-7, 2019 | Qualitative patient-centered research and evaluation of COAs | ||
| 2019.05 | Do current treatments target the high-burden fibrosis population in non-alcoholic steatohepatitis (NASH)? | Oliver L, Jiandani N, Povsic M, Tavella F, Rousseau B | Poster presented at ISPOR, May 2019. Value in Health vol. 22,2,S178 | View Publication | Hepatology | Treatment pathways/burden of illness |
| 2019.05 | Policies to improve AMR practices: An industry and HCP perspective | Karakusevic A, Collings H, Tavella F, Rousseau B | Poster presented at ISPOR, May 2019. Value in Health vol. 22,2,S308 | View Publication | Infectious diseases | Literature/landscape reviews, Evidence synthesis/utility generation |
| 2019.05 | Proposed modelling framework to assess the value of a treatment's safety profile | Hughes R, Yi Y | Poster presented at ISPOR, May 2019. Value in Health vol. 22,2,S317 | View Publication | Economic models | |
| 2019.05 | How to capture the impact of selection biases in clinical practice on the average efficacy of treatment | Hughes R, Lucherini S, Willke R | Poster presented at ISPOR, May 2019. Value in Health vol. 22,2,S320-321 | View Publication | Economic models, Evidence synthesis/utility generation | |
| 2019.05 | Economic evaluations of subcutaneously administered oncology therapies: A health technology assessment (HTA) landscape review | Wu E, Schenkel B, Povsic M, Wyn R, Hernani M, Kornalska K | Poster presented at ISPOR, May 2019. Value in Health vol. 22,2,S77 | View Publication | Oncology | Literature/landscape reviews, HTA/reimbursement |
| 2019.05 | Defining and demonstrating a child-caregiver dyad questionnaire administration approach to the assessment of pediatric health-related quality of life | Turner-Bowker DM, Yaworsky A, Lamoureux R, Kelly M, Palladino A, Love E, Loftus J | Poster presentation at ISPOR, May 2019. Value in Health, 2019;22(SUPPLEMENT 2): S35. | View Publication | Pediatric care | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs |
| 2019.05 | Development of Patient-Reported Outcome (PRO) and observer-reported outcome (OBSRO) measures for assessment of symptom intensity in dengue illness | Saretsky T, Marks M, Sinha A, Cuesta H, Coller BA, Lee AWT, Wells JR, Gater A, Morrison AC, Paz-Soldan VA, Endy T, Thomas S, Panter C | Poster presented at ISPOR, May 2019. Value in Health, 2019;22(Supp 2):S210 | View Publication | Infectious diseases, Pediatric care | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2019.05 | Linguistic validation of the Canine Dermatitis Quality of Life and Treatment Satisfaction Questionnaire (CDQoL-TSQ) for use in Thailand and Italy | Wright A, Wells J, Brohan E | Poster presented at ISPOR, May 2019. Value in Health, 2019;22(Supp 2):S387 | View Publication | Animal health, Dermatology | COA instrument development or modification, Qualitative patient-centered research and evaluation of COAs |
| 2019.05 | Assessing clinical meaningfulness of quality of life (qol) change in patients with cushing’s disease: calculation of minimal important difference estimates for the cushingqol using anchor and distribution-based approaches | Wu Y, Brohan E, Sully K, Maamari R | Poster presented at ECE 2019, May 2019. Endocrine Abstracts, 2019;63:P732 | View Publication | Endocrinology/Metabolic diseases | Psychometric evaluation and statistical analysis of COAs |
| 2019.05 | Qualitative assessment of the content validity of the SNOT-22 in patients with nasal polyps | Hall R, Trennery C, Bradley H, Gater A, Sikirica MV, Nelsen LM, Evitt L | Poster presented at ISPOR, May 2019. Value in Health, 2019;22(Supp 2):S360 | View Publication | Respiratory diseases | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2019.05 | The development and implementation of mobile applications for the collection of patient experience data | Trennery C, Wells J, Hall R, Panter C, Arbuckle R, Gater A | Poster presented at ISPOR, May 2019. Value in Health, 2019;22( Supp 2):S267 | View Publication | Qualitative patient-centered research and evaluation of COAs | |
| 2019.05 | Animal Health - The New Kid on the Block? Development and psychometric evaluation of outcome measures in animal health and next steps | Brohan E | Symposium presented at ISPOR, May 2019 | Animal health | Psychometric evaluation and statistical analysis of COAs | |
| 2019.05 | Health care resource utilization (HCRU) of patients with advanced non-small cell lung cancer (NSCLC) treated with nivolumab versus docetaxel: results from the CheckMate 078 (CM078) trial | Lawrance R, DeRosa M, Taylor F, Penrod JR, Shaw JW, Wang F | Poster presented at ISPOR, May 2019. Value in Health, 2019;22(Supp 2):S79 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2019.05 | Patient-reported quality of life (QoL) of advanced melanoma patients in a Phase 3 study of nivolumab (NIVO) with or without ipilimumab (IPI) versus IPI: CheckMate 067 4-year data | Schadendorf D, Larkin J, Wolchok J, Chiarion-Sileni V, Taylor F, Lawrance R, Moreno-Koehler A, Lord-Bessen J, Rizzo JI, Moshyk A, Kotapat Si, Hodi FS | Poster presented at ASCO Annual Meeting, May 2019 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2019.05 | Quality of life (QoL) and symptom burden in patients (pts) with advanced melanoma (MEL) during the treatment-free interval (TFI) after discontinuation of nivolumab (NIVO) or NIVO plus ipilimumab (IPI) | Taylor F, Regan MM, Schadendorf D, Atkins MB, Lawrance R, Moreno-Koehler A, Moshyk A, Rao S, Ritchings C, Kotapati S, Lord-Bessen J, Rizzo JI, McDermott DF, Middleton MR | Poster presented at ASCO Annual Meeting, May 2019. Journal of Clinical Oncology, 2019;37(15):9568 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2019.05 | Psychometric evaluation and score interpretation of the NCCN-FACT Ovarian Symptom Index-18 in patients with advanced ovarian cancer: Real-world evidence | Trigg A, Kelly M, Iadeluca L, Chang J, Moreno-Koehler A, Yaworsky A, Krohe M, Rider A, Cappelleri JC, Cella D, Cocks K | Poster presented at ISPOR, May 2019. Value in Health, 2019;22(Supp 2):S110 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2019.05 | Validation of the Scoring Algorithm for a Novel Integrative Secondary Progressive Multiple Sclerosis (SPMS) Screening Tool | Ziemssen T, Piani-Meier D, Bennett B, Johnson C, Tinsley K, Trigg A, Dahlke F, Tomic D, Tolley C, Freedman SM | Poster presented at American Academy of Neurology, May 2019. Neurology, 2019;92(15):P3.2-011 | View Publication | CNS/Neurology | Psychometric evaluation and statistical analysis of COAs |
| 2019.05 | Most bothersome symptom measurement strategies: Considerations for regulated clinical trials | Mazar I, Ollis S, Li S, Yaworsky A, Gwaltney C | Poster presented at ISPOR, May 2019. Value in Health, 2019;22(SUPPLEMENT 2): S267. | View Publication | Literature and COA instrument reviews | |
| 2019.05 | Clinician input for the development of patient-reported outcomes: How many interviews are enough? | Mossman B, Mazar I, Klooster B, Severson K, Foley C | Poster presented at ISPOR, May 2019. Value in Health, 2019;22(SUPPLEMENT 2): S364. | View Publication | Dermatology | Qualitative patient-centered research and evaluation of COAs |
| 2019.05 | Development of the side effects of peanut oral immunotherapy diary (SEPOD) | Turner-Bowker DM, Jalbert JJ, Krohe M, Yaworsky A, Kelly M, Padilla B, Chaston E, Radin A, Mastey V, Nadeau KC | Poster presented at ISPOR, May 2019. Value in Health, 2019;22(SUPPLEMENT 2): S183. | View Publication | Immunology | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2019.05 | Novel measurement strategies for collection of clinical outcome assessments (COAs) in a pediatric population | Turner-Bowker DM, Krohe M, Yaworsky A, Kelly M, Padilla B, Chaston E, Radin A, Mastey V, Nadeau KC, Jalbert JJ | Poster presentation at ISPOR, May 2019. Value in Health, 2019;22(SUPPLEMENT 2): S183-S184. | View Publication | Pediatric care | COA instrument development or modification |
| 2019.04 | Elicitation of health state utility values in phenylketonuria from a modified Delphi panel | Bilder D, Lewis M, Bausell H, Jain M, van Backle J, Jha A, Thomas J | Poster presented at the Society for Inherited Metabolic Disorders (SIMD) congress, April 2019 | Endocrinology/Metabolic diseases, Genetic diseases, Rare diseases | Evidence synthesis/utility generation | |
| 2019.03 | Qualitative patient research to support the development of a conceptual model to illustrate the experience of atopic dermatitis in adolescents | Trennery C, Larsen LS, Grant L, Silverberg J, Abramovits W, Simpson E, Stalder JF, Hahn-Pedersen CJ, Kragh N, Bang B, Arbuckle A | Poster presented at American Academy of Dermatology, March 2019 | Dermatology, Pediatric care | Qualitative patient-centered research and evaluation of COAs | |
| 2019.01 | Multi-comparator ICER: A new framework for cost-effectiveness analysis | Lucherini S, Hughes R, Okhuoya P | Published online by Cambridge University Press, January 2019 | View Publication | Economic models | |
| 2019 | Cost-effectiveness analysis of a HMGA2 prognostic test for acute myeloid leukaemia in a Canadian setting | Tremblay G, Rousseau B, Marquis M, Beaubois C, Sauvageau G, Hébert J | Applied Health Economics and Health Policy, vol. 17, 827–839 (2019) | View Publication | Oncology | Economic models |
| 2019 | A structured literature review of the epidemiology and disease burden of non-alcoholic steatohepatitis (NASH) | Povsic M, Wong OY, Perry R, Bottomley J | Advances in Therapy, 36, 1574–1594 (2019) | View Publication | Hepatology | Literature/landscape reviews |
| 2019 | A structured literature review of interventions used in the management of non-alcoholic steatohepatitis (NASH) | Povsic M, Oliver L, Jiandani NR, Perry R, Bottomley J | Pharmacology research & perspectives. 2019;7(3):e00485 | View Publication | Hepatology | Literature/landscape reviews |
| 2019 | Burden of disease and current management of dementia with lewy bodies: A literature review | Tahami Monfared AA, Meier G, Perry R, Joe D | Neurol Ther 8, 289–305 (2019) | View Publication | CNS/Neurology | Literature/landscape reviews |
| 2019 | The impact of perennial allergic rhinitis with/without allergic asthma on sleep, work and activity level | Rodriguez Romano M, James S, Farrington E, Perry R, Elliott L | Allergy, Asthma & Clinical Immunology, 15, 81 (2019) | View Publication | Allergies, Respiratory diseases | Evidence synthesis/utility generation |
| 2019 | The economic burden of pediatric asthma in the United States: Literature review of current evidence | Perry R, Braileanu G, Palmer T, Stevens P | PharmacoEconomics 37, 155–167 (2019) | View Publication | Respiratory diseases, Pediatric care | Literature/landscape reviews |
| 2019 | Nausea and vomiting of pregnancy and resource implications: The NVP Impact Study | Gadsby R, Rawson V, Dziadulewicz E, Rousseau B, Collings H | British Journal of General Practice 2019; 69 (680): e217-e223 | View Publication | Women's health | Treatment pathways/burden of illness |
| 2019 | Quality of Life Was Not Negatively Impacted By the Addition of Lenalidomide to R-CHOP Chemotherapy (R2-CHOP) Compared with Placebo Plus R-CHOP Chemotherapy in Patients with Previously Untreated Activated B-Cell (ABC)-Type Diffuse Large B-Cell Lymphoma (DLBCL): Health-Related Quality of Life (HRQoL) Analysis of the International Robust Study | Chiappella A, Witzig TE, Cocks K, Greenwood M, Williams A, Scott DW, Gascoyne RD, Yamamoto K, Jurczak W, Özcan M, Belada D | Blood, 2019;134(Supp 1):3475 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2019 | Health-related quality of life in the ENDEAVOR study: carfilzomib-dexamethasone vs bortezomib-dexamethasone in relapsed/refractory multiple myeloma | Ludwig H, Moreau P, Dimopoulos MA, Mateos MV, Kaiser M, Hajek R, Feng S, Cocks K, Buchanan J, Weisel K | Blood Cancer Journal, 2019;9:23, https://doi.org/10.1038/s41408-019-0181-0 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2019 | Convenience, satisfaction, health-related quality of life of once-weekly 70 mg/m 2 vs. twice-weekly 27 mg/m 2 carfilzomib (randomized ARROW study) | Moreau P, Kumar S, Boccia R, Iida S, Goldschmidt H, Cocks K, Trigg A, Zahlten-Kumeli A, Yucel E, Panjabi SS, Dimopoulos M | Leukemia, 2019;33:2934-2946 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2019 | HSR19-107: Nivolumab for Newly Diagnosed Classical Hodgkin Lymphoma: Patient-Reported Outcomes From CheckMate 205 Cohort D | Ramchandren R, Ansell SM, Armand P, Engert A, Taylor F, Cocks K, Chen C, Bennett B, Moreno-Koehler A, Roeder A, Sumbul A | Journal of the National Comprehensive Cancer Network, 2019;17(3.5):HSR19-107 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2019 | Nivolumab plus ipilimumab versus chemotherapy as first-line treatment in advanced non–small-cell lung cancer with high tumour mutational burden: patient-reported outcomes results from the randomised, open-label, phase III CheckMate 227 trial | Reck M, Schenker M, Lee KH, Provencio M, Nishio M, Lesniewski-Kmak K, Sangha R, Ahmed S, Raimbourg J, Feeney K, Fabio CR, Franke A, Richardet E, Penrod JR, Yuann Y, Nathan FE, Bhagavatheeswarann P, DeRosa M, Taylor F, Lawrance R, Brahmer J | European Journal of Cancer, 2019;116:137-147 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2019 | Exploring the Impact of Infusion Frequency in Hemophilia A: Exit Interviews with Patients Participating in BAY 94-9027 Extension Studies (PROTECT VIII) | Wells JR, Gater A, Marshall C, Tritton T, Vashi P, Kessabi S | The Patient, 2019;12:611-619 | View Publication | Hematology | Qualitative exit and in-trial interviews |
| 2019 | Development of a conceptual model to illustrate the symptom experience and humanistic burden associated with atopic dermatitis in adults and adolescents | Grant L, Larsen LS, Trennery C, Silverberg JI, Abramovits W, Simpson EL, Stalder J-F, Paty J, Hahn-Pedersen J, Kragh N, Bang B, Arbuckle R | Dermatitis, 2019;30(4):247-254 | View Publication | Dermatology, Pediatric care | Qualitative patient-centered research and evaluation of COAs |
| 2019 | International standards for the analysis of quality of life and patient reported outcomes endpoints in cancer randomised controlled trials: recommendations based on critical reviews of the literature and international multi-expert, multi-stakeholder collaborative process | Coens C, Pe M, Dueck AC, Sloan J, Basch E, Calvert M, Campbell A, Cleeland C, Cocks K, Collette L, Devlin N, Dorme L, Fletchtner H-H, Gotay C, Griebsch I, Gornvold M, King M, Fleutz PG, Koller M, Malone DC, Martinelli F, Mitchell SA, Musoro MZ, O'Connor D, Oliver K, Piault-Louis E, Piccart M, Quinten C, Reijneveld JC, Schurmann C, Wilder Smith A, Soltys KM, Taphoorn MJB, Velikova G, Bottomley A for SISAQOL consortium | Lancet Oncology, 2019;21(2):e83-e96 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs, Literature and COA instrument reviews |
| 2019 | A Q-TWiST Analysis Comparing Nivolumab and Therapy of Investigator’s Choice in Patients with Recurrent/Metastatic Platinum-Refractory Squamous Cell Carcinoma of the Head and Neck | Cocks K, Contente M, Simpson S, DeRosa M, Taylor FC, Shaw JW | PharmacoeEconomics, 2019;37:1041-1047 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2019 | Psychometric evaluation of a patient-reported outcome measure in pancreatic exocrine insufficiency (PEI) | Johnson CD, Williamson N, Janssen-van Solingen G, Arbuckle R, Johnson C, Simpson S, Staab D, Dominguez-Munoz E, Levy P, Connett G, Lerch MM | Pancreatology, 2019;19(1):182-190 | View Publication | Endocrinology/Metabolic diseases | Psychometric evaluation and statistical analysis of COAs |
| 2019 | Minimally important differences for interpreting EORTC QLQ-C30 scores in patients with advanced breast cancer | Musoro JZ, Coens C, Frederic F, Katarzyna P, Fatima C, Russell NS, King MT, Cocks K, Sprangers MAG, Groenvold M, Velikova G, Flechtner H-H | Cancer Spectrum, 2019;3(3):pkz037 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2019 | Estimation of minimally important differences and responder definitions for EORTC QLQ-MY20 scores in multiple myeloma patients | Sully K, Trigg A, Bonner N, Moreno-Koehler A, Trennery C, Shah N, Yucel E, Panjabi S, Cocks K | European Journal of Haematology, 2019;103(5):500-509 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2019 | Impact of Elotuzumab Plus Pomalidomide and Dexamethasone on Health-Related Quality of Life in Patients with Relapsed/Refractory Multiple Myeloma Enrolled in the ELOQUENT-3 Study | Weisel K, Paner A, Engelhardt M, Taylor F, Cocks K, Popa-McKiver M, Chen C, Cavo M | European Journal of Haematology, 2019;132(Supp 1):2288 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2019 | Linguistic validation of the CDQoL-TSQ for use in Thailand and Italy | Wright A, Wells J, Brohan E | Value in Health, 2019;22(Supp 2):S387 | View Publication | Animal health, Dermatology | COA instrument development or modification |
| 2019 | Health utilities and quality of life in individuals with tuberous sclerosis complex (TSC) who experience epileptic seizures: a web-based survey | Tritton T, Bennett B, Brohan E, Grant L, Cooper A, Fladrowski C, Evanochko C, Neary M, Vieira J, Buffa V, Kingswood | Epilepsy and Behavior, 2019;92:213-220 | View Publication | CNS/Neurology | Qualitative patient-centered research and evaluation of COAs |
| 2019 | Psychometric validation of Anti-Clot Treatment Scale and Treatment Satisfaction Questionnaire for Medication version II in Japanese Patients with Atrial Fibrillation | Watanabe-Fujinuma E, Banderas B, Koretsune Y, Kumagai K, Uchiyama S, Yamashita T, Yasaka M, Akiyama S, Briere JB, Dickie G, Cano SJ | Journal of Medical Economics, 2019;22(8): 798-805. | View Publication | Cardiovascular | Psychometric evaluation and statistical analysis of COAs |
| 2019 | Understanding key symptoms, side effects, and impacts of HR+/HER2- advanced breast cancer: Qualitative study findings | Galipeau N, Klooster B, Krohe M, Tang DH, Revicki DA, Cella D | J Patient Rep Outcomes, 2019;3: 10. | View Publication | Oncology | Qualitative patient-centered research and evaluation of COAs |
| 2019 | Content validity of the National Comprehensive Cancer Network - Functional Assessment of Cancer Therapy - Breast Cancer Symptom Index (NFBSI-16) and Patient-Reported Outcomes Measurement Information System (PROMIS) Physical Function Short Form with advanced breast cancer patients | Krohe M, Tang D, Klooser B, Revicki D, Galipeau N, Cella D | Health Qual Life Outcomes, 2019; 17:92. | View Publication | Oncology | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2019 | Understanding the life experience of Barth Syndrome from the perspective of adults: A qualitative one-on-one interview study | Mazar I, Stokes J, Ollis S, Love E, Espensen A, Barth PG, Powers JH, Shields AL | Orphanet Journal of Rare Disease, 2019;14(1): 243. | View Publication | Genetic diseases, Rare diseases | Qualitative patient-centered research and evaluation of COAs |
| 2019 | Qualitative interviews with patients with mucopolysaccharidosis type I (MPS I) and caregivers to evaluate the Mucopolysaccharidosis Health Assessment Questionnaire (MPS-HAQ) | Pabla AK, Litcher-Kelly L, Pollissard L, Yaworsky A, Ollis S, Kelly M, Padilla B, Hamad A | Poster presented at WORLD Symposium 2019 | View Publication | Genetic diseases | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2019 | Rater reliability testing of the Physician Wart Assessment for common warts: A noninterventional, observational study | Shanler SD, Powala C, Shields AL, Bradshaw M, Schnyder J | Poster presented at American Association of Dermatology Annual Meeting, Washington, DC, March 1-5, 2019 | Dermatology | Psychometric evaluation and statistical analysis of COAs | |
| 2019 | Understanding key symptoms, side effects and impacts of HR+ and HER2- advanced breast cancer: qualitative patient interviews | Cella D, Dillard S, Galipeau N, Higgins S, Klooster B, Krohe M, Revicki D, Tang D, Small T | Presented at ISPOR, 2019 | Oncology | Qualitative patient-centered research and evaluation of COAs | |
| 2019 | Techniques for the Psychometric Evaluation of Clinical Outcomes Assessment (COA) Measures Used in Rare Disease | Turner-Bowker DM, Sen R, Morrissey L, Kelly M, Severson K, Litcher-Kelly L | Presented at 24th Annual Conference of the International Society for Quality of Life Research | Rare diseases | Psychometric evaluation and statistical analysis of COAs | |
| 2018.12 | Measurement of sickle cell disease symptoms from the patient perspective: Considerations for clinical trials | Ojo O, Litcher-Kelly L, Mazar I, Klooster B, Ollis S, Chaston E, Roeder A, Treadwell M, Reasner DS | Poster presented at 60th ASH Annual Meeting and Exposition, San Diego, CA USA, December 1-4 2018. Blood, 2018;132(Supplement 1): 3571. | View Publication | Hematology | Qualitative patient-centered research and evaluation of COAs |
| 2018.12 | Quality-of-Life Outcomes in Patients With Relapsed/Refractory Multiple Myeloma Treated with Elozumab Plus Pomalidomide and Dexamethasone: Results From the Phase 2 Randomized ELOQUENT-3 Study | Weisel K, Paner A, Engelhardt M, Taylor F, Cocks K, Espensen A, Popa McKiver M, Chen C, Cavo M | Presented at 60th ASH Annual Meeting and Exposition, San Diego, CA USA, December 1-4 2018 | Oncology | Psychometric evaluation and statistical analysis of COAs | |
| 2018.11 | Multi-comparator ICERs in cost-effectiveness analysis to account for changes in clinical practice after the introduction of a new technology | Hughes R, Lucherini S, Crossley A, Okhuoya P | Poster presented at ISPOR, November 2018. Value in Health vol. 21,3,S376 | View Publication | Dermatology, Immunology | Economic models |
| 2018.11 | Patient influence on biosimilar uptake: The Nocebo effect | Povsic M, O'Malley J, Enstone A, Rousseau B | Poster presented at ISPOR, November 2018. Value in Health vol. 21,3,S181 | View Publication | Literature/landscape reviews, Evidence synthesis/utility generation | |
| 2018.11 | A scenario analysis of the impact of treatment setting on health care cost and treatment outcomes | Lewis M, Tavella F, Okhuoya P | Poster presented at ISPOR, November 2018. Value in Health vol. 21,3,S176-177 | View Publication | Endocrinology/Metabolic diseases | Literature/landscape reviews, Evidence synthesis/utility generation, Treatment pathways/burden of illness |
| 2018.11 | Cost effectiveness and budget impact thresholds in Health Technology Assessment | Yi Y, Davies N, Tavella F, Okhuoya P | Poster presented at ISPOR, November 2018. Value in Health vol. 21,3,S361 | View Publication | HTA/reimbursement, Economic models | |
| 2018.11 | Europe-wide spread of carbapenem-resistant bacteria: Epidemiology and disease burden | Palmer T, Collings H, Tavella F | Poster presented at ISPOR, November 2018. Value in Health vol. 21,3,S154 | View Publication | Infectious diseases | Treatment pathways/burden of illness |
| 2018.11 | The current reimbursement landscape for digital health in the UK: How far are we from a centralised, national system? | Braileanu G, Tavella F, Rousseau B | Poster presented at ISPOR, November 2018. Value in Health vol. 21,3,S188 | View Publication | Medical devices | Literature/landscape reviews |
| 2018.11 | EU5 and pharmaceutical responses to the spread of carbapenem-resistant bacteria: A policy and pipeline review | Collings H, Palmer T, Tavella F | Poster presented at ISPOR, November 2018. Value in Health vol. 21,3,S156-157 | View Publication | Infectious diseases | Access/HEOR consultancy |
| 2018.11 | Modelling the budget impact and health outcomes of the anti PD-1/PD-L1 class in cancer care in Austria | Van Bavel J, Lucherini S, Zielinski C, Walter E, Eckart G, Davies N, Okhuoya P, Pellissier J, Roediger A | Poster presented at ISPOR, November 2018 | View Publication | Oncology | Economic models |
| 2018.11 | Assessing the impact of anti PD-1/PD-L1 inhibitors on health and budget in Belgium | Van Bavel J, Lucherini S, Vermeersch S, Annemans L, Bento-Abreu A, Davies N, Okhuoya P, Pelliessier J, Roediger A | Poster presented at ISPOR, November 2018 | Oncology | Economic models, Evidence synthesis/utility generation | |
| 2018.11 | Modelling the budget impact and health outcomes of the anti PD-1/PD-L1 class in cancer care in Italy | Van Bavel J, Lucherini S, Spandonaro F, Polistena B, Dirodi B, Eterno V, Didoni G, Davies N, Pellissier J, Roediger A | Poster presented at ISPOR, November 2018 | View Publication | Oncology | Economic models |
| 2018.11 | Real-world effectiveness and tolerability of small-cell lung cancer (SCLC) treatments: A systematic literature review (SLR) | Povsic M, Enstone A, Wyn R, Kornalska K, Penrod JR, Yuan Y | Poster presented at ISPOR, November 2018. Value in Health vol. 21,3,S15 | View Publication | Oncology | Literature/landscape reviews |
| 2018.11 | Management of dry eye disease: Results from a survey of healthcare professionals in the United Kingdom | Hossain P, Christopoulou D, Anstee K, Okhuoya P | Poster presented at the Medical Contact Lens & Ocular Surface Association (MCLOSA) conference, November 2018 | Ophthalmology | Treatment pathways/burden of illness | |
| 2018.11 | Modelling the budget impact and health outcomes of the anti PD-1/PD-L1 class in cancer care in Slovenia | Van Bavel J, Lucherini S, Rajer M, Jovanovic S, Knzaj Z, Burnik T, Davies N, Toghanian S, Pellissier J, Roediger A | Poster presented at EUPHA, 2018 | Oncology | Economic models | |
| 2018.11 | Assessing the impact of PD-1/PD-L1 inhibitors on health and budget in Belgium | Van Bavel J, Lucherini S, Vermeersch S, Annemans L, Bento-Abreu A, Davies N, Okhuoya P, Pelliessier J, Roediger A | European Journal of Public Health, vol. 28, Issue suppl_4, November 2018 | View Publication | Oncology | Economic models, Evidence synthesis/utility generation |
| 2018.11 | Considerations for using a web-based system to collect patient-reported outcome (PRO) data | Tritton T, Panter C, Johnson C, Bradley H, Tinsley K, Bennett B | Oral presentation at ISPOR, November 2018. Value in Health, 2018;21(Supp 3):S12 | View Publication | Literature and COA instrument reviews | |
| 2018.11 | CheckMate 078: Patient-Reported Outcomes (PROs) With Nivolumab vs Docetaxel in Advanced Non-Small Cell Lung Cancer (NSCLC) | Wu YL, Chang J, Zhang L, Tu HY, Wu L, Feng J, Lu S, Zhou C, Wang J, Mok T, Taylor F, Mossman B, Penrod JR, Lawrance R, Blum SI, Wang PF, Cheng Y | Oral presentation at IASLC Asia Conference on Lung Cancer, November 2018. Journal of Thoracic Oncology, 2018;13(12):S1047-S1048 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2018.11 | Patient and caregiver web-based survey: health utilities in tuberous sclerosis complex (TSC) patient population | Bennett B, Cooper A Fladrowski C, Evanochko C, Neary MP, Vieira J, Buffa V, Grant L, Tritton T, Kingswood C | Poster presented at ISPOR, November 2018. Value in Health, 2018;21(Supp 3):S349 | View Publication | CNS/Neurology, Rare diseases, Genetic diseases | Psychometric evaluation and statistical analysis of COAs |
| 2018.11 | Best practice methods and considerations for the development, evaluation, and implementation of interviewer-administered patient-reported outcomes (ADPROS) | Burrows K, Marshall C, Arbuckle R, Turner-Bowker D, Stokes J, Krohe M, Yaworsky A, Mazar I | Poster presented at ISPOR, November 2018. Value in Health, 2018;21(Supp 3):S326 | View Publication | Qualitative patient-centered research and evaluation of COAs | |
| 2018.11 | Adapting influenza patient-reported outcomes (PRO) measures to monitor respiratory syncytial virus (RSV) symptom severity in adults: qualitative evidence of key concepts and content validity | Scott J, Sully K, Tatlock S, Ireland A, Arbuckle R | Poster presented at ISPOR, November 2018. Value in Health, 2018;21(Supp 3):S242 | View Publication | Respiratory diseases | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2018.11 | Understanding the patient experience of presbyopia and identification of patient-reported outcome assessments: a literature review | Sharma G, Viriato D, Naujoks C, Patalano F, Kilgariff S, Wolffsohn JS | Poster presented at ISPOR, November 2018. Value in Health, 2018;21(Supp 3):S434 | View Publication | Ophthalmology | Literature and COA instrument reviews |
| 2018.11 | Exploring meaningful change in symptoms and functional abilities for individuals with Duchenne Muscular Dystrophy and their families. | Staunton H, Trennery C, Jethwa S, Fischer R, Furlong P, Hall R | Poster presented at Action Duchenne International Conference, November 2018 | Musculoskeletal diseases | Qualitative patient-centered research and evaluation of COAs | |
| 2018.11 | Cognitive debriefing interview studies to inform patient-reported outcome questionnaire development: a literature review and suggested reporting guidelines | Dickie G, Mazar I, Espensen A, Lamoureux RL, Severson K, Padilla B, Shields AL | Poster presented at ISPOR, November 2018. Value in Health, 2018;21(3): S327. | View Publication | Literature and COA instrument reviews | |
| 2018.11 | Vision correction scale (VCS): Psychometric evaluation of scores from a patient-reported outcome questionnaire that assesses vision correction at near, intermediate, and far distances following cataract surgery with intraocular lens replacement | Galipeau N, Litcher-Kelly L, Chacko J, Bowyer B, Moreno-Koehler A, Shields AL | Poster presented at ISPOR, November 2018 | Ophthalmology | Psychometric evaluation and statistical analysis of COAs | |
| 2018.11 | Promoting patient engagement in the development of patient-reported outcome measures for rare diseases | Mazar I, Power SL, Bruell KA, Litcher-Kelly L | Poster presented at Conference on Clinical Research for Rare Diseases, Rockland MD, USA, 19 November 2018 | Rare diseases | COA instrument development or modification | |
| 2018.11 | A discrete choice exercise to evaluate factors driving growth hormone deficient (GHD) patient preferences for injection and injection device features | McNamara M, Westhead H, Gross HJ, Turner-Bowker DM, Yaworsky A, Pleil A, Loftus J | Poster presented at ISPOR, November 2018. Value in Health, 2018;21(SUPPLEMENT 3): S139-S140. | View Publication | Endocrinology/Metabolic diseases | Patient preference research |
| 2018.11 | What matters to individuals with sickle cell disease? Patient input on the relevant and important symptoms and impacts of the condition | Ojo O, Litcher-Kelly L, Mazar I, Klooster B, Ollis S, Chaston E, Roeder A, Reasner DS | Poster presented at ISPOR, November 2018. Value in Health, 2018;21(SUPPLEMENT 3): S472-S473. | View Publication | Hematology | Qualitative patient-centered research and evaluation of COAs, Literature and COA instrument reviews |
| 2018.1 | Triangulating estimates of meaningful change or difference in patient-reported outcomes: application of a correlation-based weighting procedure | Harper A, Trennery C, Sully K, Trigg A | Oral Presentation at ISOQOL, October 2018 | View Publication | Psychometric evaluation and statistical analysis of COAs | |
| 2018.1 | A qualitative study of patient and clinician perspectives on item importance, scoring preferences, and clinically important differences for two patient-reported outcome measures: Endometriosis Symptom Diary (ESD) and Endometriosis Impact Scale (EIS) | Haberland C, Trigg A, Aldhouse N, Willgoss T, Schmitz H, Gater A, Gerlinger C, Seitz C | Poster presented at ISOQOL, October 2018 | Women's health | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification | |
| 2018.1 | Exploring the value of real-time data capture to understand the patient experience of Hand Osteoarthritis | Gatsi S, Arbuckle R, Berry P, Chauhan D, Park J, Wells J, Panter C | Poster presented at ISOQOL, October 2018 | View Publication | Musculoskeletal diseases | Qualitative patient-centered research and evaluation of COAs |
| 2018.1 | The latent structure of the Oxford Knee Score: learnings for validation employing big data | Trigg A, Plamer T | Poster presented at ISOQOL, October 2018 | View Publication | Psychometric evaluation and statistical analysis of COAs | |
| 2018.1 | Patient perspectives on the value of reduced infusion frequency and longevity of protection for prophylactic treatment of hemophilia A | Wells JR, Gater A, Marshall C, Tritton T, Vashi PB, Kessabi S | Poster presented at National Hemophilia Fpoundation (NHF) Bleeding Disorders Conference, October 2018 | Hematology | Qualitative patient-centered research and evaluation of COAs | |
| 2018.1 | The development and psychometric evaluation of an ePRO diary designed to assess the symptoms of chest congestion associated with the common cold in children 6-17 years old | Burrows K, Marshall C, Shea T, Smith A, Albrecht H, Tritton T, Arbuckle R | Workshop presented at ISOQOL, October 2018 | Respiratory diseases, Pediatric care | Psychometric evaluation and statistical analysis of COAs, COA instrument development or modification, Qualitative patient-centered research and evaluation of COAs | |
| 2018.1 | Evaluating the measurement properties of the Pediatric RSV Severity and Outcome Rating Scale (PRESORS) Clinician-Reported Outcome (ClinRO) and Observer-Reported Outcome (ObsRO) measures for assessing severity of pediatric Respiratory Syncytial Virus (RSV) infection | De la Loge C, Rusch S, Williams P, Stevens M, Fennema H, Abetz-Webb L, Scott J | Poster presented at ISOQOL, October 2018 | View Publication | Pediatric care, Respiratory diseases | Psychometric evaluation and statistical analysis of COAs |
| 2018.1 | Development and qualitative content validation of the Pediatric RSV Severity and Outcome Rating Scales (PRESORS) Clinician-Reported Outcome (ClinRO) and Observer-Reported Outcome (ObsRO) measures for infants and young children: challenges and considerations | Scott J, Tatlock S, Kilgariff S, Stevens M, Rusch S, Arbuckle A, Abetz-Webb L | Poster presented at ISOQOL, October 2018 | Respiratory diseases, Pediatric care | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification | |
| 2018.1 | Interpretation guidelines to define clinical relevance for Patient-Reported Outcome (PRO) Measures | Cocks K, Sully K, King M | Workshop presented at ISOQOL, October 2018 | Literature and COA instrument reviews, Psychometric evaluation and statistical analysis of COAs | ||
| 2018.1 | Qualitative evidence on the content validity of EORTC QLQ-C30: Initial findings | Cocks K, Tolley C, Grant L, Wells J, Wheelwright S, Tomaszewski K, Gronvold M, Bottomley A, Fitzsimmons D, Velikova G, Oerlemans S | Oral presentation at ISOQOL, October 2018 | View Publication | Oncology | Qualitative patient-centered research and evaluation of COAs |
| 2018.1 | Qualitative methods for exploring meaningful change thresholds, including the use of vignettes: value, implementation and learnings | Grant L, Trennery C, Larsen LS, Arbuckle R | Poster presented at ISOQOL, October 2018 | Qualitative patient-centered research and evaluation of COAs | ||
| 2018.1 | Psychometric validation of the Endometriosis Symptoms Diary (ESD) and Endometriosis Impact Scale (EIS): Findings from an interventional study | Haberland C, Gater A, Wessiepe D, Schmitz H, Gerlinger C, Seitz C | Oral presentation at ISOQOL, October 2018 | Women's health | Psychometric evaluation and statistical analysis of COAs | |
| 2018.1 | Understanding the patient experience of presbyopia via a social media listening study | Leteneux-Pantais C, Viriato D, Wolffsohn J S, Kilgariff S, Kommineni J, Tyagi N | Poster presented at ISOQOL, October 2018 | Ophthalmology | Literature and COA instrument reviews | |
| 2018.1 | Clinician (ClinRO) and Caregiver (ObsRO) reported severity assessments for respiratory syncytial virus (RSV) in infants and young children: Development and qualitative content validation of Pediatric RSV Severity and Outcome Rating Scales (PRESORS) | Scott J, Tatlock S, Kilgariff S, Arbuckle R, Abetz-Webb L, Rusch S, Steven M | Poster presented at ISOQOL, October 2018 | Respiratory diseases, Pediatric care | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification | |
| 2018.09 | CheckMate 227: Patient-Reported Outcomes of First-Line Nivolumab + Ipilimumab in High Tumor Mutational Burden Advanced NSCLC | Brahmer J, Schenker M, Lee KH, Provencio M, Nishio M, Lesniewski-Kmak K, Sangha R, Ahmed S, Raimbourg J, Feeney K, Corre R, Franke FA, Richardet E, Penrod JR, Yuan Y, Nathan F, Bhagavatheeswaran P, DeRosa M, Taylor F, Lawrence R, Reck M | Oral presentation at WCLC, September 2018 Journal of Thoracic Oncology, 2018;13(10):S332 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2018.09 | Content Validity of Two Patient-reported Outcome Questionnaires to Measure the Impacts Experienced by Individuals with Glabellar Lines | Burgess CM, Mariwalla K, Green JB, Banderas BF, Foley C, Turner-Bowker D, Shields AL, Rubio RG, Park E | Presented at 27th European Academy of Dermatology and Venereology Congress, Paris, France, September 12-16 2018 | Dermatology | Qualitative patient-centered research and evaluation of COAs | |
| 2018.09 | Content Validity of Patient- and Clinician-reported Questionnaires Assessing the Appearance-based Severity of Glabellar Lines | Burgess CM, Mariwalla K, Green JB, Banderas BF, Foley C, Turner-Bowker D, Shields AL, Rubio RG, Park E | Presented at 27th European Academy of Dermatology and Venereology Congress, Paris, France, September 12-16 2018 | View Publication | Dermatology | Qualitative patient-centered research and evaluation of COAs |
| 2018.08 | Assessing quality of life (QoL) in patients with seizures associated with tuberous sclerosis complex (TSC) | Bennett B, Cooper A, Fladrowski C, Evanochko C, Neary M, Vieira J, Buffa V, Grant L, Tritton T, Kingswood C | Poster presented at European Congress on Epileptology, August 2018 | Genetic diseases, CNS/Neurology, Rare diseases | Qualitative patient-centered research and evaluation of COAs | |
| 2018.08 | Statistical analysis of patient-reported outcome data in randomised controlled trials of locally advanced and metastic breast cancer: a systematic review | Pe M, Dorme L, Coens C, Basch E, Calvert M, Campbell A, Cleeland C, Cocks K, Collette L, Dirven L, Dueck AC, Devlin N, Flechtner H-H, Gotay C, Griebsch I, Groenvold M, King M, Koller M, Malone DC, Martinelli F, Mitchell SA, Musoro JZ, Oliver K, Piault-Louis E, Piccart M, Pimentel FL, Quinten C, Reijneveld JC, Sloan J, Velikova G, Bottomley A for the Setting International Standards in Analyzing Patient-Reported Outcomes and Quality of LifeEndpoints Data Consortium (SISAQOL) | The Lancet Oncology, 19(9);e450-e469 | View Publication | Oncology | Literature and COA instrument reviews |
| 2018.07 | Cognitive Debriefing of the Barth Syndrome – Symptom Assessment (BTHS-SA) | Stokes J, Aiudi A, Mazar I, Elliott M, Dillard S, Ollis S, Love E, Shields AL, Gwaltney C | Poster presented at the 9th International Scientific, Medical, & Family Conference Meeting of the Barth Syndrome Foundation, Clearwater, FL, USA, July 16-21 2018. | Genetic diseases, Rare diseases | Qualitative patient-centered research and evaluation of COAs | |
| 2018.07 | Exploring the Sign and Symptom Experience of Barth Syndrome in Adult and Adolescent Populations | Stokes J, Aiudi A, Mazar I, Elliott M, Dillard S, Ollis S, Love E, Shields AL, Gwaltney C | Poster presented at the 9th International Scientific, Medical, & Family Conference Meeting of the Barth Syndrome Foundation, Clearwater, FL, USA, July 16-21 2018. | Genetic diseases, Rare diseases, Pediatric care | Qualitative patient-centered research and evaluation of COAs | |
| 2018.07 | Understanding the Life Experience of Barth Syndrome from the Perspective of Older Individuals | Usmani OS, Lavorini F, Marshall J, Dunlop W, Heron L, Farrington E, Dekhuijzen R | Poster presented at the 9th International Scientific, Medical, & Family Conference Meeting of the Barth Syndrome Foundation, Clearwater, FL, USA, July 16-21 2018. | Genetic diseases, Rare diseases | Qualitative patient-centered research and evaluation of COAs | |
| 2018.06 | Multi-comparator ICER: A new framework for cost-effectiveness analysis | Ratcliffe A, Lucherini S, Hughes R, Okhuoya P | Poster presented at the HTAi conference, June 2018 | Economic models | ||
| 2018.06 | A contextual model for evaluating the value of multi-indication drugs | Wu E, Pellissier J, Bellanca L, Normand R, Hughes R, Ratcliffe A | Presented at the HTAi International Scientific Programme Committee, June 2018 | Oncology | Economic models, Evidence synthesis/utility generation | |
| 2018.06 | At-home completion to support the evaluation of content validity, usability, feasibility and preliminary measurement properties of electronic patient-reported outcome measures (ePROMs) | Wells R, Marshall C, Kilgariff S, Grant L, Bradley H, Gater A | Poster presented at PROMS Research Conference, June 2018 | Qualitative patient-centered research and evaluation of COAs | ||
| 2018.06 | Exploring the type 2 diabetes mellitus experience from the patient perspective | Yu-Isenberg K, Gray G, Foley C, Stokes J, Shields AL, Dickie G, Lamoureux R, Jackson C, Padilla B, Polonsky W | Poster presented at the American Diabetes Association's 78th Scientific Sessions, Orlando, FL, USA, June 22-26, 2018. Diabetes, 2018;67(Supplement_1): 725-P. | View Publication | Endocrinology/Metabolic diseases | Qualitative patient-centered research and evaluation of COAs, Literature and COA instrument reviews |
| 2018.06 | Patient perspectives on the burden of type 2 diabetes mellitus treatment | Yu-Isenberg K, Gray G, Foley C, Stokes J, Shields AL, Dickie G, Lamoureux R, Jackson C, Padilla B, Polonsky W | Poster presented at the American Diabetes Association's 78th Scientific Sessions, Orlando, FL, USA, June 22-26, 2018. Diabetes, 2018;67(Supplement_1): 726-P. | View Publication | Endocrinology/Metabolic diseases | Qualitative patient-centered research and evaluation of COAs, Literature and COA instrument reviews |
| 2018.05 | Review of frequently implemented patient reported outcomes in current prostate cancer clinical trials | Grimes R, Grant L, Kaur S, Brookes B, Bennett B | Poster presented at ISPOR, May 2018. Value in Health, 2018;21(Supp 1):S225 | View Publication | Oncology, Men's health | Literature and COA instrument reviews |
| 2018.05 | Development of patient-reported outcome measures for masseter prominence | Fabi S, Narurkar V, Donofrio L, Banderas B, Garcia J | Poster presented at ISPOR, May 2018. Value in Health, 2018;21(SUPPLEMENT 1): S127. | View Publication | Musculoskeletal diseases | COA instrument development or modification, Qualitative patient-centered research and evaluation of COAs |
| 2018.05 | Physician practices and perceived barriers concerning adult vaccination of patients with Medicare versus commercial insurance | McNamara M, Buck P, Yan S, Friedland LR, Lerch K, Murphy A, Turner-Bowker DM, Taylor F, Lamoureux R, Klooster B, Hogea C | Presented at the 48th National Immunization Conference, Atlanta, GA, 15-18 May 2018 | Vaccines | Qualitative patient-centered research and evaluation of COAs | |
| 2018.05 | Patient and clinician satisfaction with pharmacological stress agents (PSAs) used in single photon emission computerized tomography myocardial perfusion imaging (SPECT-MPI) | Shields AS, Hudgens S, Spalding JR, Kitt TM, Ojo O, Kristy RM, Mathias A, Morrissey L, Litcher-Kelly L, Houle CR | Poster presented at ISPOR, May 2018. Values in Health, 2018;21(SUPPLEMENT 1): S172. | View Publication | Cardiovascular | Psychometric evaluation and statistical analysis of COAs |
| 2018.05 | Evaluation of modified item characteristics on item comprehension and psychometric performance | Turner-Bowker DM, DeRosa M, Bjorner JB | Poster presented at ISPOR, May 2018. Value in Health, 2018;21(1): S225-S226. | View Publication | CNS/Neurology | Psychometric evaluation and statistical analysis of COAs, Qualitative patient-centered research and evaluation of COAs |
| 2018.05 | Psychometric evaluation of questionnaires assessing injection regimen burden in growth hormone deficient (GHD) adults and children treated with growth hormone | Turner-Bowker DM, Yaworsky A, Palladino A, Pleil A, Shields A, Kelly M, Lamoureux RE, Love E, Morrissey L, Loftus J | Poster presented at ISPOR, May 2018. Value in Health, 2018;21(1): S225. | View Publication | Endocrinology/Metabolic diseases, Pediatric care | Psychometric evaluation and statistical analysis of COAs |
| 2018.04 | Validation of the pruritus and symptoms assessment for atopic dermatitis in adults with moderate to severe atopic dermatitis | Lebwohl M, Simpson E , Bushmakin A , Cappelleri J, Gooderham M , Wollenberg A , Hall R , Gater A , Wells J, Papacharalambous J, Hsu MA , Tallman A , Peeva E, Zhang W, Chen L | Poster presented at Georg Rajka International Symposium on Atopic Dermatitis, April 2018 | Dermatology | Psychometric evaluation and statistical analysis of COAs | |
| 2018.04 | Understanding the patient perspective of small cell lung cancer | Rydén A, Ollis S, Love E, Shields AL, Jiang H, Dennis PA | Poster presented at the 8th European Lung Cancer Congress, Geneva, Switzerland 11-14 April 2018. Journal of Thoracic Oncology, 2018;13(4): S44. | View Publication | Oncology | Qualitative patient-centered research and evaluation of COAs, Literature and COA instrument reviews |
| 2018.03 | Insights into the effect of switching to insulin glargine 300 units/ml on HbA1c and daily basal insulin dosage in type 1 diabetes: A treatment-pattern web-based survey in the United Kingdom | Hodgson M, Perry R, Ali A, Price J | Poster presented at the Diabetes UK Professional Conference, March 2018 | Endocrinology/Metabolic diseases, Immunology | Evidence synthesis/utility generation | |
| 2018 | Cost-utility analysis of an intervention designed to reduce the critical handling error of insufficient inspiratory effort | Forster R, Ratcliffe A, Lewis M, Crossley A, Lopez Bastida J, Dunlop W | The European Journal of Health Economics, vol. 19, 1303–1318 (2018) | View Publication | Respiratory diseases, Medical devices | Economic models, Evidence synthesis/utility generation |
| 2018 | Critical inhaler errors in asthma and COPD: A systematic review of impact on health economics | Usmani OS, Lavorini F, Marshall J, Dunlop W, Heron L, Farrington E, Dekhuijzen R | Respiratory Research, 19:10 (2018) | View Publication | Respiratory diseases, Medical devices | Literature/landscape reviews |
| 2018 | A contextual model for evaluating the value of multi-indication drugs | Wu E, Pellissier J, Bellanca L, Normand R, Hughes R, Ratcliffe A | International Journal of Technology Assessment in Health Care, 34(S1), 18-19 | View Publication | Oncology | Economic models, Evidence synthesis/utility generation |
| 2018 | The economic burden of small cell lung cancer: A systematic review of the literature | Enstone A, Greaney M, Povsic M, Wyn R, Penrod J, Yuan Y | PharmacoEconomics Open, 2:125–139 (2018) | View Publication | Oncology | Literature/landscape reviews |
| 2018 | Real-world effectiveness and tolerability of small-cell lung cancer (SCLC) treatments: A systematic literature review (SLR) | Povsic M, Enstone A, Wyn R, Kornalska K, Penrod JR, Yuan Y | PLoS ONE 14(7): e0219622 | View Publication | Oncology | Literature/landscape reviews |
| 2018 | Moving forward toward standardizing analysis of quality of life data in randomized cancer clinical trials | Bottomley A, Pe M, Sloan J, Basch E, Bonnertaint F, Calvert M, Campbell A, Cleeland C, Cocks K, Collette L, Dueck AC, Devlin N, Flechtner H-H, Gotay C, Greimel E, Griebsch I, Groenvold M, Hamel J-F, King M, Kluetz PG, Koller M, Malone DC, Martinelli F, Mitchell S, Moinpour CM, Musoro JZ, O'Connor D, Oliver K, Piault-Louis E, Piccart M, Pimentel FL, Quinten C, Reijneveld JC, Schurmann C, Smith AW, Soltys KM, Sridhara R, Taphoom MJB, Velikova G, Coens C for the Setting International Standards in Analyzing Patient-Reported Outcomes and Quality of Life Endpoints Data (SISAQOL) Consortium | Clinical Trials, 2018;15(6):624-630 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2018 | Evaluation of a crosswalk between the European Quality of Life Five Dimension Five Level and the Menopause-Specific Quality of Life questionnaire | Coon C, Bushmakin A, Tatlock S, Williamson N, Moffatt M, Arbuckle R, Abraham L | Climacteric, 2018;21(6):566-573 | View Publication | Women's health | Psychometric evaluation and statistical analysis of COAs |
| 2018 | Interpreting European Organisation for Research and Treatment for Cancer Quality of life Questionnaire core 30 scores as minimally importantly different for patients with malignant melanoma | Musoro JZ, Bottomley A, Coens C, Eggermont AM, King MT, Cocks K, Sprangers MA, Groenvold M, Velikova G, Flechtner HH, Brandberg Y | European Journal of Cancer, 2018;104:169-181 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2018 | Establishing anchor-based minimally important differences (MID) with the EORTC quality-of-life measures: a meta-analysis protocol | Musoro ZJ, Hamel J-F, Ediebah DE, Cocks K, King MT, Groenvold M, Sprngers MAG, Brandberg Y, Velikova G, Maringwa J, Flechtner H-H, Bottomley A, Coens C | BMJ Open, 2018;8:e019117 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2018 | A Mixed Methods Approach to Generate Meaningful Change Estimates EORTC QLQ-MY20 | Yucel E, Trigg A, Sully K, Harper A, Bonner N, Shah N, Panjabi S, Cocks K | Blood, 2018;132:5912 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2018 | Working together to foster better patient-centred cancer care: “Setting International Standards in Analysing Patient-Reported Outcomes and Quality Of Life Endpoints Data” | Oliver K, Peuters C, on behalf of the SISAQOL Consortium | Brain Tumour Magazine: World Edition 2017/2018 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2018 | Psychometric evaluation of electronic diaries assessing side-effects of hormone therapy | Tatlock S, Abraham L, Bushmakin A, Moffatt M, Williamson N, Coon C, Arbuckle R | Climacteric; 2018:21(6):594-600 | View Publication | Women's health | Psychometric evaluation and statistical analysis of COAs |
| 2018 | Development and content validity of new patient-reported outcome questionnaires to assess the signs and symptoms and impact of atopic dermatitis: The Atopic Dermatitis Symptom Scale (ADerm-SS) and the Atopic Dermatitis Impact Scale (ADerm-IS) | Foley C, Tundia N, Simpson E, Teixeira HD, Litcher-Kelly L, Bodhani A | Current Medical Research and Opinion, 2018: 1-10. | View Publication | Dermatology | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2018 | Measuring Health-Related Quality of Life in Tuberous Sclerosis Complex–psychometric evaluation of three instruments in individuals with refractory epilepsy | De Vries PJ, Franz DN, Curatolo P, Nabbout R, Neary M, Herbst F, Sully K, Brohan E, Bennett B, Lawson JA | Frontiers in Pharmacology, 2018;9:964 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2018 | Use of both qualitative and quantitative methods to estimate meaningful change thresholds for key endpoints in pediatric asthma trials | Arbuckle R, Staunton H, Sully K, Tomkins S, Khindri S, Svedsater H, Nelsen L | Value in Health, 2018;22(Supp 3):340-347 | View Publication | Pediatric care, Respiratory diseases | Qualitative patient-centered research and evaluation of COAs |
| 2018 | Fatigue, treatment satisfaction and health‐related quality of life among patients receiving novel drugs suppressing androgen signalling for the treatment of metastatic castrate‐resistant prostate cancer | Dearden L, Shalet N, Artenie C, Mills A, Jackson C, Grant L, Gater A | European Journal of Cancer Care, 2018;28(1):e12949 | View Publication | Oncology, Men's health | Qualitative patient-centered research and evaluation of COAs, Psychometric evaluation and statistical analysis of COAs |
| 2018 | Understanding and measuring symptoms and health status in asthma COPD overlap: content validity of the EXACT and SGRQ | Nelsen L, Gater A, Panter C, Tolley C, Lee L, Pascoe S | Journal of Patient Reported Outcomes. 2:18 | View Publication | Respiratory diseases | Qualitative patient-centered research and evaluation of COAs |
| 2018 | Evaluation of health-related quality of life and symptoms in patients with advanced non-squamous non-small cell lung cancer treated with nivolumab or docetaxel in CheckMate 057 | Reck M, Brahmer J, Bennett B, Taylor F, Penrod JR, DeRosa M, Dastani H, Spigel DR, Gralla RJ | European Journal of Cancer, 2018;102:23-30 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2018 | Qualitative Research to Explore the Patient Experience of X-Linked Hypophosphatemia and Evaluate the Suitability of the BPI-SF and WOMAC® as Clinical Trial End Points | Theodore-Oklota C, Bonner N, Spencer H, Arbuckle R, Chen C-Y, Skrinar A | Value in Health, 2018;21(8):973-983 | View Publication | Genetic diseases, Endocrinology/Metabolic diseases | Qualitative patient-centered research and evaluation of COAs |
| 2018 | International development of four EORTC disease-specific quality of life questionnaires for patients with Hodgkin lymphoma, high-and low-grade non-Hodgkin lymphoma and chronic lymphocytic leukaemia | van de Poll-Franse L, Oerlemans S, Bredart A, Kyriakou C, Sztankay M, Pallua S, Daniels L, Creutzberg CL, Cocks K, Malak S, Caocci G, Molica S, Chie W, Efficace F on behalf of the EORTC Quality of Life Group | Quality of Life Research, 2018;27(2):333-345 | View Publication | Oncology | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Literature and COA instrument reviews |
| 2018 | Development of a new patient‐reported outcome (PRO) measure on the Impact of Nighttime Urination (INTU) in patients with nocturia—Psychometric validation | Bennett JB, Gillard KK, Banderas B, Abrams S, Cheng L, Fein S | Neurourology and Urodynamics, 2018;37: 1678–1685. | View Publication | Urology/Urogenital | Psychometric evaluation and statistical analysis of COAs |
| 2018 | Development of a Symptom-Focused Patient-Reported Outcome Measure for Functional Dyspepsia: The Functional Dyspepsia Symptom Diary (FDSD) | Taylor F, Higgins S, Carson R, Eremenco S, Foley C, Lacy B, Parkman H, Reasner D, Shields AL, Tack J, Talley N | American Journal of Gastroenterology, 2018;29:2: 152-164. | View Publication | Gastroenterology | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs |
| 2018 | Understanding the experience of MPS I patients to improve outcomes assessments: A literature review | Hamed A, Litcher-Kelly L, Yaworsky A, Pabla A, Pollisard L, Munoz-Rojas MV, Ollis S, Kelly M, Shields A | Poster presented at 15th International Symposium on MPS and Related Diseases | Genetic diseases, Endocrinology/Metabolic diseases | Literature and COA instrument reviews | |
| 2018 | Development and initial psychometric evaluation of patient reported outcome questionnaires to evaluate the symptoms and impact of hidradenitis suppurativa | Kimball A, Sundarum M, Banderas B, Foley C, Shields AL | Journal of Dermatological Treatment, 2018;29:2: 152-164. | View Publication | Dermatology, Immunology | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs |
| 2018 | Patient-reported treatment satisfaction with rivaroxaban in Japanese non-valvular atrial fibrillation patients: an observational study | Koretsune Y, Kumagai K, Uchiyama S, Yamashita T, Masahiro Y, Watanabe-Fujinuma E, Banderas BF, Akiyama S, Okayama Y, Briere JB, Dickie G, Cano SJ | Current Medical Opinion and Research, 2018: 1-8. | View Publication | Cardiovascular | Psychometric evaluation and statistical analysis of COAs |
| 2018 | Burden and impacts of daily recombinant human growth hormone (r-hGH) injections in growth hormone deficient (GHD) paediatric patients | Loftus J, Pleil A, Lamoureux RE, Turner-Bowker DM, Yaworsky A, Kelly M, Love E, McNamara M, Westhead H, Palladino A | Poster presented at 57th Annual European Society for Paediatric Endocrinology (ESPE) Meeting | View Publication | Endocrinology/Metabolic diseases, Pediatric care | Qualitative patient-centered research and evaluation of COAs |
| 2018 | Quality of Care in Rheumatoid Disease from the Clinician Perspective: A Modified Delphi Panel Approach | O'Shea F, Taylor PC, Dickie G, Yaworsky A, Banderas B, Kachroo S | Rheumatology and Therapy, 2018;5(1): 87-98. | View Publication | Musculoskeletal diseases, Immunology | Qualitative patient-centered research and evaluation of COAs, Literature and COA instrument reviews |
| 2018 | Quality of Care in Ulcerative Colitis: A Modified Delphi Panel Approach | Peyrin-Biroulet L, Baumgart DC, Armuzzi A, Gionchetti A, Sebastian S, Danese S, Magro F, Higgins S, Yaworsky A, Banderas B, Kachroo S | Digestive Diseases, 2018;36(5): 346-353. | View Publication | Gastroenterology, Immunology | Qualitative patient-centered research and evaluation of COAs, Literature and COA instrument reviews |
| 2018 | Impact of nivolumab versus docetaxel on health-related quality of life and symptoms in patients with advanced squamous non-small-cell lung cancer: results from the CheckMate 017 study | Reck M, Taylor F, Penrod JR, DeRosa M, Morrissey L, Dastani H, Orsini L, Gralla RJ | Journal of Thoracic Oncology, 2018;13(2): 194-204. | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2018 | Use of antipsychotic blood levels in clinician decision making: A cross-over study using clinical vignettes of patients with schizophrenia | Savitz A, Melkote R, Riley R, Pobre MA, McQuarrie K, Williamson D, Banderas B | Psychiatry Res. 2018;267: 25-29. | View Publication | CNS/Neurology | Qualitative patient-centered research and evaluation of COAs |
| 2018 | Informing a priori Sample Size Estimation in Qualitative Concept Elicitation Interview Studies for Clinical Outcome Assessment Instrument Development | Turner-Bowker DM, Lamoureux RE, Stokes J, Litcher-Kelly L, Galipeau N, Yaworksy A, Solomon J, Shields AL | Value in Health, 2018;21(7): 839-842. | View Publication | Qualitative patient-centered research and evaluation of COAs, Literature and COA instrument reviews | |
| 2018 | Qualitative research to explore the patient experience of X-Linked Hypophosphatemia and evaluate the suitability of the BPI-SF and WOMAC® as clinical trial endpoints | Theodore-Oklota C, Bonner N, Spencer H, Arbuckle R, Chen C-Y, Skrinar A | Value in Health, 2018;21(8):973-983 | View Publication | Endocrinology/Metabolic diseases, Genetic diseases | Qualitative patient-centered research and evaluation of COAs |
| 2018 | Understanding relationships between symptoms and impacts through a narrative analysis lens | Solomon J, Shields AL, Globe D, Foley C, Roy A, Pompiluus F, Yaworsky A, Ghate S, Perez JR | Poster presented at ISOQOL, 2018 | Qualitative patient-centered research and evaluation of COAs | ||
| 2017.11 | Maternal screening and treatment for group B streptococcus (GBS) are associated with non-adherence to guidelines, false-negative results and high management costs in the United Kingdom, Italy, France, Spain and Germany | Iadeluca L, Farrington E, McLean T, Rousseau B, Agosti Y, Absalon J, Anderson AS | Poster presented at ISPOR, November 2017. Value in Health vol. 20,9,PA797-A798 | View Publication | Women's health, Infectious diseases | Literature/landscape reviews, Treatment pathways/burden of illness |
| 2017.11 | Understanding the barriers to vaccine access and uptake in EU5: Rotavirus vaccination case study | Collings H, Fadeyi I, Tavella F, Heron L | Poster presented at ISPOR, November 2017. Value in Health vol. 20,9,PA795 | View Publication | Gastroenterology, Infectious diseases, Vaccines | Literature/landscape reviews, Access/HEOR consultancy |
| 2017.11 | Differences in vaccine pricing between high-income and low-income markets | Fadeyi I, McLean T, Tavella F, Heron L | Podium presentation at ISPOR, November 2017. Value in Health vol. 20,9,PA411 | View Publication | Vaccines | Literature/landscape reviews |
| 2017.11 | Market access challenges to PD-1 immunotherapies: Lessons from NICE | McLean T, Tavella F, Heron L | Poster presented at ISPOR, November 2017. Value in Health vol. 20,9,PA470 | View Publication | Oncology | Access/HEOR consultancy |
| 2017.11 | Initiatives that impact pricing and reimbursement of orphan (and ultra orphan) drugs: Review of European trends | Rousseau B, Poinas AC, Oliver L, Collings H | Poster presented at ISPOR, November 2017. Value in Health vol. 20,9,PA695-A696 | View Publication | Rare diseases | HTA/reimbursement |
| 2017.11 | Assessing the joint probability of cost-effectiveness and affordability in decision making | Yi Y, Lucherini S, Bellanca L, Heron L | Poster presented at ISPOR, November 2017. Value in Health vol. 20,9,PA753 | View Publication | Economic models, Evidence synthesis/utility generation | |
| 2017.11 | Cost-utility analysis of a novel breath-triggered aerosol inhaler which has been designed to reduce the critical handling error of insufficient inspiratory effort | Forster R, Ratcliffe A, Lewis M, Crossley A, Lopez Bastida J, Dunlop W | Poster presented at ISPOR, November 2017. Value in Health vol. 20,9,PA586 | View Publication | Respiratory diseases, Medical devices | Economic models, Evidence synthesis/utility generation |
| 2017.11 | Predicting EQ-5D utility index scores for gastric cancer patients in Japan: a preliminary model | Pike J, Maglinte GA, Rider A, Cocks K, Taylor F, Contente M, Calvo E | Poster presented at ISPOR, November 2017. Value in Health, 2017;20(9): PA447. | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2017.11 | Qualitative exploration of the real-world experiences of men receiving or refusing chemotherapy (docetaxel) for the treatment of metastatic hormone-sensitive prostate cancer (MHSPC) | Ito T, Grant L, Mills A, Heselwood A, Gater A | Poster presented at ISPOR, November 2017. Value in Health, 2017;20(9):PA450 | View Publication | Oncology, Men's health | Qualitative patient-centered research and evaluation of COAs |
| 2017.11 | Evaluating patient reported outcomes commonly used in current lung cancer clinical trials | Grimes R, Grant L, Kaur S, Spencer H, Brookes B, Bennett B | Poster presented at ISPOR, November 2017. Value in Health, 2017;20(9)PA764 | View Publication | Oncology | Literature and COA instrument reviews |
| 2017.11 | Are there differences in FACT-G scores between different tumour types for an EU population using real world data? | Hallworth P, Simpson S, Bennett B, Byrne K, Rider A, Desai T, Cocks K | Poster presented at ISPOR, November 2017. Value in Health, 2017;20(9):PA456 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2017.11 | Helath-related quality of life in oncology - are we getting better? | Byrne K, Simpson S, Bennett B, Rider A, Halworth P, Desai T, Cocks K | Poster presented at ISPOR, November 2017. Value in Health, 2017;20(9):PA456 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2017.11 | Special considerations for conducting qualitative interviews with cancer patients and their caregivers for the purpose of developing cinical outcome assessments | Spencer H, Grant L, Kaur S, Grimes R, Brookes B, Bennett B | Poster Presented at ISPOR, November 2017. Value in Health, 2017;20(9):PA777 | View Publication | Oncology | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs |
| 2017.11 | Understanding the value and feasibility of engaging patients in the design of clinical trials and clinical outcome assessment measurement strategies: insights from experiences in oncology and gout | Bennett B, Tatlock S, Rudell K, Manson S | Workshop at ISPOR, November 2017 | Oncology | Qualitative patient-centered research and evaluation of COAs | |
| 2017.11 | Engaging patients in the development and validation of patient-reported outcome (PRO) measures as partners, not just participants | Panter C, Wells J, Williamson N, Kaur S, Tatlock S, Hall R, Gater A | Poster Presented at ISPOR, November 2017. Value in Health, 2017;20(9):PA776-A777 | View Publication | Literature and COA instrument reviews, COA instrument development or modification | |
| 2017.11 | Evaluation of patient (PRO) and observer-reported outcomes (OBSRO) measures regarding acceptability and palatability of eltrombopag in a poediatric population | Sully K, Roy A, Bennett B, D'Alessio D, Beall S, Singer ST | Poster Presented at ISPOR, November 2017. Value in Health, 2017;20(9):PA691 | View Publication | Pediatric care, Hematology | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs |
| 2017.11 | Rare Diseases, Are Caregivers Just as Affected as Patients? | Bonner N, Hall R, Tritton T, Grimes R, Trennery C, Spencer H, Bennett B | Poster presented at ISPOR, November 2017. Value in Health, 2017;20(9):PA562 | View Publication | Rare diseases | Literature and COA instrument reviews |
| 2017.11 | Using a mixed methods approach to determine the item-scale structure and scoring for clinical outcome assessments | Williamson N, Johnson C, Cocks K, Bennett B, Tolley C, Simpson S | Poster presented at ISPOR, November 2017. Value in Health, 2017;20(9):PA778 | View Publication | Qualitative patient-centered research and evaluation of COAs, Psychometric evaluation and statistical analysis of COAs | |
| 2017.11 | Qualitative interviews to inform development of a patient reported outcome (PRO) strategy in RLBP1 retinitis pigmentosa (RLBP1 RP) | Tolley C, Mullins A, Kilgariff S, Arbuckle R, Green J, Burstedt M, Holopigian K, Stasi K, Sloesen B | Poster presented at ISPOR, November 2017. Value in Health, 2017;20(9):PA761 | View Publication | Ophthalmology | Qualitative patient-centered research and evaluation of COAs |
| 2017.11 | A quality-adjusted time without symptoms of disease and toxicity (Q-TWIST) analysis comparing nivolumab and therapy of investigator’s choice (IC) in patients with recurrent or metastatic (R/M) platinum-refractory squamous cell carcinoma of the head and neck (SCCHN) (CHECKMATE 141) | Simpson S, Cocks K, Korytowski B, Contente M, DeRosa M, Taylor F, Shaw JW | Poster presented at ISPOR, November 2017. Value in Health, 2017;20(9)PPA450 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2017.11 | Development and psychometric evaluation of an owner-completed measure of feline health and quality of life | Tatlock S, Williamson N, Arbuckle R, Gober M | Poster presented at ISPOR, November 2017. Value in Health, 2017;20(9):PA761 | View Publication | Animal health | COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs, Qualitative patient-centered research and evaluation of COAs |
| 2017.11 | Special considerations for conducting qualitative interviews with cancer patients and their caregivers for the purpose of developing cinical outcome assessments | Spencer H, Grimes R, Kaur S, Grant L, Bennett B, Brookes B | Poster Presented at ISPOR, November 2017. Value in Health, 2017;20(9):PA777 | View Publication | Oncology | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Literature and COA instrument reviews |
| 2017.11 | Association of health-related quality of life and healthcare resource utilization in CheckMate 141, a phase 3 study of nivolumab versus investigator’s choice in patients with recurrent or metastatic platinum-refractory squamous cell carcinoma of the head and neck | DeRosa M, Cocks K, Korytowsky B, Contente M, Taylor F, Shaw JW | Poster presented at ISPOR, November 2017. Value in Health, 2017;20(9): PA447. | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2017.11 | Agreement between patient and clinician ratings of disease severity in hidradenitis suppurativa, rheumatoid arthritis, and chronic plaque psoriasis | Foley C, Banderas B, Sen R, Yip C, Dickie G, Lamoureux R | Poster presented at ISPOR, November 2017. Value in Health, 2017;20(9): PA680-A681. | View Publication | Dermatology, Immunology | Psychometric evaluation and statistical analysis of COAs |
| 2017.11 | Qualitative research methods for collecting, analyzing, and presenting patient-reported data on noticeable and important change in disease-related signs and symptoms | Mazar I, Stokes J, Foley C, Galipeau N, Shields AL | Poster presented at ISPOR, November 2017. Value in Health, 2017;20(9): PA764. | View Publication | Qualitative patient-centered research and evaluation of COAs | |
| 2017.11 | The use of intra-class correlation coefficients to assess test-retest reliabilities in psychometric evaluations of patient-reported outcome measures | Sen R, Yip C, Severson K | Poster presented at ISPOR, November 2017. Value in Health, 2017;20(9): PA768. | View Publication | Psychometric evaluation and statistical analysis of COAs | |
| 2017.1 | Interpretation Guidelines to Define Clinical Relevance for Patient-Reported Outcome (PRO) Measures | Cocks K | Workshop at ISOQOL, October 2017 | Psychometric evaluation and statistical analysis of COAs | ||
| 2017.1 | Incorporating usability and feasibility testing of electronic patient-reported outcome measures as part of clinical trial development: an example from chronic pain trials | Abraham L, Gater A, Tolley C, Panter C, O'Donohoe P | Poster presented at ISOQOL, October 2017 | CNS/Neurology | COA instrument development or modification | |
| 2017.1 | Qualitatively exploring clinically meaningful change on Clinical Outcome Assessments – overview of methods, challenges and considerations Novel approaches to qualitatively exploring clinically meaningful change in a pediatric population A mixed methods approach to establishing clinically meaningful change using patient-reported outcome and observer-reported outcome data Qualitative exit interviews to establish clinically meaningful change on an observer- reported clinician administered measure and a performance reported outcome Qualitatively exploring clinically meaningful change on Clinical Outcome Assessments – overview of methods, challenges and considerations | Arbuckle R, Staunton H, Sully K | Workshop at ISOQOL, October 2017 | Pediatric care | Qualitative patient-centered research and evaluation of COAs, Qualitative exit and in-trial interviews | |
| 2017.1 | Health status in patients with SCLC treated with Nivolumab Alone or combined with Ipilimumab: CheckMate 032 | Ardizzoni A, Farago AF, Atmaca A, Calvo E, Taylor F, Bennett B, Selvaggi G, Pieters A, Penrod JR, Yuan Y, Ross Camidge D | Poster presented at World Conference on Lung Cancer of the International Association for the Study of Lung Cancer (IASLC), October 2017 | Oncology | Psychometric evaluation and statistical analysis of COAs | |
| 2017.1 | Novel integrative approach combining patient, physician and empirical assessments for diagnosing secondary progressive multiple sclerosis | Meier DP, Bennett B, Tolley C, Kilgariff S, Tomic D, Ziemssen T | Poster presented at Joint Congress of the European Committee for Treatment and Research in Multiple Sclerosis–Americas Committee for Treatment and Research in Multiple Sclerosis, October 2017 | CNS/Neurology, Immunology | COA instrument development or modification | |
| 2017.09 | Acceptability and palatability assessments of eltrombopag in a pediatric population | Sully K, Bennett B, D’Alessio D, Roy A | Poster presented at ESMO, September 2017 | Pediatric care | Qualitative patient-centered research and evaluation of COAs | |
| 2017.09 | Impact of everolimus treatment on quality of life (QoL) in patients with tuberous sclerosis complex (TSC) who have refractory partial-onset seizures in the context of an interventional clinical trial (EXIST-3) | Nabbout R, Franz DN, Lawson J, Curatolo P, Neary M, Fan J, Herbst F, Sully K, Brohan E, J de Vries P | Poster presented at 32nd International Epilepsy Conference, September 2017 | CNS/Neurology, Genetic diseases, Rare diseases | Psychometric evaluation and statistical analysis of COAs | |
| 2017.09 | Understanding the functional impact of movement disorders in glucose transporter type 1 deficiency syndrome (Glut1 DS) | Bowden A, Collins P, Blair S, Wedsock K, Haller M, Brandabur M, Hall R, Kilgariff S, Arbuckle R, Mayhew J, Skrinar A | Abstract presented at International Congress of Inborn Errors, September, 2017 | Endocrinology/Metabolic diseases | Qualitative patient-centered research and evaluation of COAs, Literature and COA instrument reviews | |
| 2017.09 | Characterization of Patients With Galactosialidosis and Sialidosis Type I | Cimms T, Ali Q A, Kilgariff S, Johnson C, Arbuckle R, Malkus B, Schatz A, Haller C | Poster presented at International Congress of Inborn Errors, September 2017 | Genetic diseases | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs | |
| 2017.09 | Psychometric evaluation and interpretation of change in the Canine Dermatitis Quality of Life and Treatment Satisfaction Questionnaire (CDQoL-TSQ) | Tatlock S, Wright A, Wells J, Hillier A, Holland R, Mwacalimba K | Poster presented at Annual Congress of the European Society and College of Veterinary Dermatology (ESVD-ESCD), September 2017 | Animal health, Dermatology | Psychometric evaluation and statistical analysis of COAs | |
| 2017.09 | Qualitative research to explore the pediatric patient experience of X-Linked Hypophosphataemia (XLH) and to evaluate the content validity of PROMIS® item banks, FPS-R® and POSNA-PODCI for use as clinical trial endpoints | Theodore-Oklota C, Arbuckle R, Marshall C, Spencer H | Abstract presented at International Meeting of Pediatric Endocrinology, September 2017 | Endocrinology/Metabolic diseases, Genetic diseases | Qualitative patient-centered research and evaluation of COAs | |
| 2017.07 | Development of a Patient-Reported Outcome Instrument for the Measurement of the Sexual Impacts of Psoriasis | Cather JC, Horn EJ, Foley C, Sundaram M, Iovin R, Pompilus F, Stokes J, AL Shields | Presented at the 4th World Psoriasis & Psoriatic Arthritis Conference. Stockholm, Sweden, July 8-11 2015 | Dermatology, Immunology | COA instrument development or modification | |
| 2017.06 | Development and validation of patient-reported outcome measures (PROMs): selecting the most appropriate qualitative research methods to establish content validity | Grant L, Wells J, Kilgariff S, Marshall C, Gater A | Poster presented at Advances in Patient Reported Outcomes Research Conference, June 2017 | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Literature and COA instrument reviews | ||
| 2017.06 | Development of a Paroxysmal Movement Disorder Diary for Patients with Glucose Transporter Type 1 Deficiency Syndrome (Glut1 DS) | Hall R, Kilgariff S, Collins P, Brandabur M, Arbuckle R, Bowden A | Abstract presented at International Congress of Parkinson’s Disease & Movement Disorder, June 2017. Movement Disorders, 2017;32(Supp 2) | View Publication | Endocrinology/Metabolic diseases | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs |
| 2017.06 | Psychometric validation of a Patient-Reported Outcome questionnaire in patients with Pancreatic Exocrine Insufficiency | Johnson C, Williamson N, Janssen-van Solingen G, Arbuckle R, Johnson C, Simpson S, Staab D, Dominguez-Munoz E, Levy P, Connett G, Lerch M | Poster presented at European Pancreatic Club (EPC) Meeting, June 2017 | Endocrinology/Metabolic diseases | Psychometric evaluation and statistical analysis of COAs | |
| 2017.06 | Cultural relevance of the global impact of Dravet Syndrome in Australia, Italy, the US and UK | Nabbout R, Auvin S, Cross JH, Guerrini R, Scheffer I, Thiele E, Chiron C, Irwin J, Mistry A, Williamson N, Grimes R, Bennett B | Poster presented at European Paediatric Neurology Society (EPNS) conference, June 2017. European Journal of Paediatric Neurology, 2017;21(Supp 1):E187 | View Publication | CNS/Neurology | Qualitative patient-centered research and evaluation of COAs |
| 2017.06 | Cognitive Debriefing of the Barth Syndrome – Symptom Assessment (BTHS-SA) | Stokes J, Aiudi A, Mazar I, Elliott M, Dillard S, Ollis S, Love E, Shields AL, Gwaltney C | Presented at 19th Annual Conference of the United Mitochondrial Disease Foundation (June 28 – July 1); Alexandria, VA USA | Genetic diseases, Rare diseases | Qualitative patient-centered research and evaluation of COAs | |
| 2017.06 | Cognitive Debriefing of the Primary Mitochondrial Myopathy – Symptom Assessment (PMM-SA) | Stokes J, Covino J, Aiudi A, Mazar I, Dillard S, Ollis S, Love E, Shields AL, Gwaltney C | Oral Presentation at 19th Annual Conference of the United Mitochondrial Disease Foundation (June 28 – July 1); Alexandria, VA USA | Genetic diseases | Qualitative patient-centered research and evaluation of COAs | |
| 2017.05 | Conducting qualitative ‘exit’ interviews following clinical trials or observational studies: a valuable method for understanding the patient experience, informing measurement strategy, and aiding interpretation of patient-reported outcomes | Arbuckle R, Carson RT, Maltzahn R, Staunton H | Workshop presented at ISPOR, May 2017 | Qualitative exit and in-trial interviews | ||
| 2017.05 | The use of qualitative (exit) interviews in clinical trials: Value, implementation and key considerations | Gater A, Marshall C, Grant L, Wells J | Poster presented at ISPOR, May 2017 | Qualitative exit and in-trial interviews | ||
| 2017.05 | Understanding key symptoms, side effects and impacts of HR+ and HER2- advanced breast cancer: Literature review and expert interviews | Krohe M, Tolley C, Higgins S, Cella D, Revicki D, Small T, Tang D | Poster presented at ISPOR, May 2017 | Oncology | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs | |
| 2017.05 | How does measurement of multiple medication adherence differ between chronic diseases? | Malmenäs M, Pednekar P, Bennett B, Borah B | Forum presented at ISPOR, May 2017 | Literature and COA instrument reviews | ||
| 2017.05 | A worked example of using computer-assisted qualitative data analysis software (CAQDAS) to support content validity in patient-centered outcomes research | Marshall C, Grant L, Wells J, Williamson N, Gater A | Poster presented at ISPOR, May 2017 | View Publication | Qualitative patient-centered research and evaluation of COAs | |
| 2017.05 | Respondent Understanding and User Experience with the Asthma Daily Symptom Diary (ADSD), a Novel Patient-Reported Outcome Measure | Nelsen L M, Gater A, Bonner N, Hall R, Staunton H, Eremenco S, on behalf of the Patient-Reported Outcome Consortium’s Asthma Working Group | Poster presented at American Thoracic Society International Conference, May 2017. American Journal of Respiratory and Critical Care Medicine, 2017;195:A3334 | View Publication | Respiratory diseases | COA instrument development or modification, Qualitative patient-centered research and evaluation of COAs |
| 2017.05 | Preliminary psychometric evaluation of the Asthma Daily Symptom Diary (ADSD) | Nelsen LM, Gater A, Coon C, Bonner N, Hall R, Staunton H, Coons SJ, on behalf of the Patient-Reported Outcome Consortium’s Asthma Working Group | Poster presented at American Thoracic Society International Conference, May 2017. American Journal of Respiratory and Critical Care Medicine, 2017;195:A3335 | View Publication | Respiratory diseases | Psychometric evaluation and statistical analysis of COAs |
| 2017.05 | Characterizing the patient experience of Asthma COPD Overlap Syndrome and COPD | Nelsen LM, Tolley C, Gater A, Panter C, Pascoe S, Lee LA | Poster presented at American Thoracic Society International Conference, May 2017. American Journal of Respiratory and Critical Care Medicine, 2017;195:A4721 | View Publication | Respiratory diseases | Qualitative patient-centered research and evaluation of COAs |
| 2017.05 | Qualitative research to explore the patient experience of X-Linked Hypophosphataemia (XLH) and to evaluate the content validity of the BPI-SF and WOMAC® for use as clinical trial endpoints | Theodore-Oklota C, Arbuckle R, Bonner N, Spencer H | Poster presented at ISPOR, May 2017 | Genetic diseases, Endocrinology/Metabolic diseases | Qualitative patient-centered research and evaluation of COAs | |
| 2017.05 | Psychometric evaluation of the Brief Pain Inventory - Short Form (BPI-SF) and Western Ontario and McMaster Universities Osteoarthritis Index (WOMAC®) for use in X-Linked Hypophosphataemia (XLH), a rare genetic disorder | Theodore-Oklota C, Brohan E, Marshall C, Tritton T | Poster presented at ISPOR, May 2017 | Endocrinology/Metabolic diseases, Genetic diseases | Psychometric evaluation and statistical analysis of COAs | |
| 2017.05 | Understanding the symptoms, impacts and treatment side-effects of advanced bladder cancer from the perspective of the literature, clinicians, and patients | Degboe A, Banderas B, Halling K, Mazar I, Mann E | Poster presented at ISPOR, May 2017 | Oncology | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs | |
| 2017.05 | Analyses of healthcare resource use (HCRU) in Checkmate 141, a Phase III study of Nivolumab versus therapy of investigator’s choice (IC) in patients with recurrent or metastatic (R/M) platinum-refractory squamous cell carcinoma of the head and neck (SCCHN) | DeRosa M, Cocks K, Taylor F, Bobiak S, Juarez Garcia A, Shaw JW | Poster presented at ISPOR, May 2017 | Oncology | Psychometric evaluation and statistical analysis of COAs | |
| 2017.05 | Techniques for tailoring an interview guide for pediatric concept elicitation and cognitive debriefing interviews | Krohe M, Morrissey L, Turner-Bowker, DM | Poster presented at ISPOR, May 2017 | Pediatric care | Qualitative patient-centered research and evaluation of COAs | |
| 2017.05 | Saturation of sign and symptom concepts in concept elicitation studies with rare disease and vulnerable patient populations | Mazar I, Stokes J, Shields AL | Poster presented at ISPOR, May 2017 | Rare diseases | Qualitative patient-centered research and evaluation of COAs | |
| 2017.05 | Placement of recall period in patient-reported outcome questionnaire items: Does it matter? | Mazar I, Taylor F, Higgens S, Shields AL, Carson R, Eremenco S, Reasner DS, Levy-Hacham O, Mizrahi R, Nadler-Milbauer M, Nov O, Toledano O, Coons SJ | Poster presented at ISPOR, May 2017 | COA instrument development or modification | ||
| 2017.05 | Development and content validity of the Patient-Reported Intraocular Lens Questionnaire (PR-ILQ) | Shields AL, Galipeau N, Chacko J, Lamoureux RE, Mazar I, Bowyer B | Poster presented at ISPOR, May 2017 | Ophthalmology | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification | |
| 2017.05 | Exploring the sign and symptom experience of Barth Syndrome in adult and adolescent populations | Stokes J, Aiudi A, Mazar I, Elliott M, Dillard S, Ollis S, Love E, Shields AL, Gwaltney C | Poster presented at ISPOR, May 2017 | Genetic diseases, Rare diseases, Pediatric care | Qualitative patient-centered research and evaluation of COAs | |
| 2017.05 | Exploring and documenting the signs, symptoms, and impacts of primary mitochondrial disesase | Stokes J, Covino J, Aiudi A, Mazar I, Dillard S, Ollis S, Love E, Shields AL, Gwaltney C | Poster presented at ISPOR, May 2017 | Genetic diseases | Qualitative patient-centered research and evaluation of COAs | |
| 2017.05 | Cognitive Debriefing of the Advanced Systemic Mastocytosis Symptom Assessment Form (advSM-SAF) | Taylor F, Kreil S, Reiter A, Horny HP, Evans E, Mazar I, McNamara P, Boral A, Lamoureux RE, Shields A, Gotlib J | Poster presented at ISPOR, May 2017 | Oncology | Qualitative patient-centered research and evaluation of COAs | |
| 2017.05 | Content validity of questionnaires assessing injection regimen burden in growth hormone deficient (GHD) adults and children treated with growth hormone | Turner-Bowker DM, Shields A, Yaworsky A, Lamoureux R, Morrissey L, Kelly M, Love E, Pleil A, Hart G, Hershkovitz O, Loftus J | Poster presented at ISPOR, May 2017 | Endocrinology/Metabolic diseases, Pediatric care | Qualitative patient-centered research and evaluation of COAs | |
| 2017.04 | Psychometric evaluation of quality of life measures in a three-arm, randomized, double-blind, placebo-controlled phase III study of everolimus as adjunctive therapy in patients with tuberous sclerosis complex (TSC) who have refractory partial-onset seizures (EXIST-3) | J de Vries P, Franz DN, Curatolo P, Nabbout R, Berkowitz N, Neary M, Herbst F, Sully K, Brohan E, Lawson J | Poster presented at American Academy of Neurology, April 2017. Neurology, 2017;88(16):P2.057 | View Publication | CNS/Neurology, Rare diseases, Genetic diseases | Psychometric evaluation and statistical analysis of COAs |
| 2017.04 | Development of the canine dermatitis quality of life and treatment satisfaction questionnaire: a tool for clinical practice | Wright A, Tatlock S, Wells J, Panter C, Brohan E, Hillier A, Holland R, Mwacalimba K | Poster presented at North American Veterinary Dermatology Forum (NAVDF), April 2017 | Animal health, Dermatology | COA instrument development or modification, Qualitative patient-centered research and evaluation of COAs | |
| 2017.03 | Assessing Atopic Dermatitis Symptoms in Adolescents and Adults: Development of a Patient-Reported Symptom Diary | Hall R, Gater A, Wells J, Chen L, Papacharalambous J, Cappelleri JC, Hsu M-A | Poster presented at American Academy of Dermatology Annual Meeting, March 2017 | Dermatology, Pediatric care | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification | |
| 2017.03 | Validation of two cancer care plan communication tools | Staunton H, Yagnik S, Williamson N, Spencer H, Kaur S, Bennett B, Donelson S, Jagun D, Goertz H, Stein A | Presented at ASCO Quality of Care Symposium, March 2017 Journal of Clinical Oncoogy, 2017;35(8):145 | View Publication | Oncology | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2017.02 | The Functional Impact of Movement Disorders Symptoms in Glucose Transporter Type 1 Deficiency Syndrome (Glut1 DS) | Bowden A, Kilgariff S, Hall R, Brandabur M, Collins P | Poster presented at International Symposium on Paediatric Movement Disorders, February 2017 | Endocrinology/Metabolic diseases | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs | |
| 2017.02 | Evaluating Patient Preference for Haemophilia A Treatment | Schulz M, Gordo A, Tolley C, Staunton H, Brohan E, Spurden D, Cicchetti M, Cappelleri JC | Presented at EAHAD Annual Congress, February 2017. Blood, 2016;128(22):4973 | View Publication | Hematology | Patient preference research |
| 2017 | Living with the burden of relapse in multiple myeloma from the patient and physician perspective | Hulin C, Hansen T, Heron L, Pughe R, Streetly M, Plate A, Perkins S, Morgan K, Tinel A, Rodrigues F, Ramasamy K | Leukaemia Research 59 (2017) 75-84 | View Publication | Oncology | Treatment pathways/burden of illness, Evidence synthesis/utility generation |
| 2017 | Development and validation of the angiotensin-converting enzyme inhibitor (ACEI) induced angioedema investigator rating scale and proposed discharge criteria | Bonner N, Panter C, Kimura A, Sinert R, Moellman J, Bernstein J A | BMC Health Services Research, 2017;17:366 | View Publication | Cardiovascular | Qualitative patient-centered research and evaluation of COAs, Psychometric evaluation and statistical analysis of COAs, COA instrument development or modification |
| 2017 | Nivolumab versus standard, single-agent therapy of investigator's choice in recurrent or metastatic squamous cell carcinoma of the head and neck (CheckMate 141): health-related quality-of-life results from a randomised, phase 3 trial | Harrington KJ, Ferris RL, Blumenschein G Jr, Colevas AD, Fayette J, Licitra L, Kasper S, Even C, Vokes EE, Worden F, Saba NF, Kiyota N, Haddad R, Tahara M, Grünwald V, Shaw JW, Monga M, Lynch M, Taylor F, DeRosa M, Morrissey L, Cocks K, Gillison ML, Guigay J | Lancet Oncology, 2017;18(8): 1104-1115. | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2017 | Health-related quality of life results from the phase III CheckMate 067 study | Schadendorf D, Larkin J, Wolchok J, Hodi FS, Chiarion-Sileni V, Gonzalez R, Rutkowski P, Grob JJ, Cowey CL, Lao C, Wagstaff J, Callahan MK, Postow MA, Smylie M, Ferrucci PF, Dummer R, Hill A, Taylor F, Sabater J, Walker D, Kotapati S, Abernethy A, Long GV | European Journal of Cancer, 2017;82: 80-91. | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2017 | Development and preliminary evidence of the psychometric properties of the GNE myopathy functional activity scale | Mayhew J, Bonner N, Arbuckle R, Turnbull A, Bowden A, Skrinar A | Journal of Comparative Effectiveness Research, 2017;7(4):381-395 | View Publication | Musculoskeletal diseases, Rare diseases | Psychometric evaluation and statistical analysis of COAs |
| 2017 | The Humanistic Burden of Small Cell Lung Cancer (SCLC): A Systematic Review of Health-Related Quality of Life (HRQoL) Literature | Bennett B M, Wells J R, Panter C, Yuan Y, Penrod J R | Front Pharmacol, 2017;8:339 | View Publication | Oncology | Literature and COA instrument reviews |
| 2017 | HaemoPREF: Further evaluation of patient perception and preference for treatment in a real world setting | Bonanad S, Schulz M, Gordo A, Spurden D, Cicchetti M, Cappelleri JC, Tolley C, Staunton H, Brohan E | Haemophilia, 2017;23:884-893 | View Publication | Hematology | Psychometric evaluation and statistical analysis of COAs |
| 2017 | Qualitative Assessment of the Symptoms and Impact of Pancreatic Exocrine Insufficiency (PEI) to Inform the Development of a Patient-Reported Outcome (PRO) Instrument | Johnson C D, Arbuckle R, Bonner N, Connett G, Dominguez-Munoz E, Levy P, Staab D, Williamson N, Lerch M M | The Patient, 2017;10(5): 615–628 | View Publication | Endocrinology/Metabolic diseases | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Literature and COA instrument reviews |
| 2017 | Health-related quality of life in South African patients with pulmonary tuberculosis | Kastien-Hilka T, Rosenkranz B, Sinanovic E, Bennett B | PLoS One, 2017;20;12(4):e0174605. doi: 10.1371/journal.pone.0174605. eCollection 2017 | View Publication | Respiratory diseases | Psychometric evaluation and statistical analysis of COAs |
| 2017 | Development and content validation of a preliminary core set of patient- and caregiver-relevant outcomes for inclusion in a potential composite endpoint for Dravet Syndrome | Nabbout R, Auvin S, Chiron C, Irwin J, Mistry A, Williamson N | Epilepsy & Behavior, 2017;78: 232-242 | View Publication | CNS/Neurology, Rare diseases | Qualitative patient-centered research and evaluation of COAs |
| 2017 | Psychometric validation of the dysmenorrhea daily diary (DysDD): a patient-reported outcome for dysmenorrhea | Nguyen A, Arbuckle R, Korver T, Chen F, Taylor B, Turnbull A, Norquist J | Quality of Life Research, 2017;26(8):2041-2055 | View Publication | Women's health | Psychometric evaluation and statistical analysis of COAs |
| 2017 | Assessing the Comparability of Paper and Electronic Versions of the EORTC QOL Module for Head and Neck Cancer: A Qualitative Study | Norquist J, Chirovsky D, Munshi T, Tolley C, Panter C, Gater A | JMIR Cancer, 2017;3(1):e7 | View Publication | Oncology | Qualitative patient-centered research and evaluation of COAs |
| 2017 | Psychometric validation of the Heart Failure Caregiver Questionnaire (HF-CQ®) | Strömberg A, Bonner N, Grant L, Bennett B, Chung M, Jaarsma T, Luttik M, Lewis E, Calado F | Patient, 2017;10:579-592 | View Publication | Cardiovascular | Psychometric evaluation and statistical analysis of COAs |
| 2017 | Development and psychometric evaluation of an owner-completed measure of feline health and quality of life | Tatlock S, Gober M, Williamson N, Arbuckle R | The Veterinary Journal, 2017;228:22-32 | View Publication | Animal health | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs |
| 2017 | Psychometric Evaluation of a Treatment Acceptance Measure for Use in Patients Receiving Treatment via Subcutaneous Injection | Tatlock S, Sanchez R, Grant L, Khan I, Manvelian G, Spertus J | Value in Health, 2017;20(3):430-440 | View Publication | Psychometric evaluation and statistical analysis of COAs | |
| 2017 | Development and Psychometric Evaluation of the Self-Assessment of Psoriasis Symptoms (SAPS) – Clinical Trial and the SAPS – Real World Patient Reported Outcomes | Amstrong AW, Banderas B, Foley C, Stokes J, Sundaram M, Shields AL | Journal of Dermatological Treatment, 2017: 1-41. | View Publication | Dermatology, Immunology | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs |
| 2017 | Development of the Rheumatoid Arthritis Symptom Questionnaire (RASQ): a patient reported outcome scale for measuring symptoms of rheumatoid arthritis | Banderas B, Skup M, Shields AL, Mazar I, Ganguli A | Current Medical Research Opinion, 2017;33(9): 1643-1651. | View Publication | Musculoskeletal diseases, Immunology | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Literature and COA instrument reviews |
| 2017 | Psychometric evaluation of the Rheumatoid Arthritis Symptom Questionnaire (RASQ) in an observational study | Banderas B, Skup M, Shields AL, Stokes J, Foley C, Ganguli A | Current Medical Research Opinion, 2017;33(12): 2121-2128. | View Publication | Immunology, Musculoskeletal diseases | Psychometric evaluation and statistical analysis of COAs |
| 2017 | Diarrhea-predominant irritable bowel syndrome: creation of an electronic version of a patient reported outcome instrument by conversion from a pen-and-paper version and evaluation of their equivalence | Delgado-Herrera L, Banderas B, Ojo O, Kothari R, Zeiher B | Patient Related Outcome Measures, 2017;8: 83-95. | View Publication | Gastroenterology | COA instrument development or modification, Qualitative patient-centered research and evaluation of COAs |
| 2017 | Evaluation and performance of a newly developed patient-reported outcome instrument for diarrhea predominant irritable bowel syndrome in a clinical study population | Delgado-Herrera L, Lasch K, Zeiher B, Lembo AJ, Drossman DA, Banderas B, Lademacher C, Arbuckle R | Therapeutic Advances in Gastroenterology, 2017;10(9): 673-687. | View Publication | Gastroenterology | Psychometric evaluation and statistical analysis of COAs |
| 2017 | Effect of nivolumab on patient-reported outcomes in patients with relapsed/refractory classical Hodgkin Lymphoma after autologous hematopoietic cell transplantation: results from the multicohort phase 2 CheckMate 205 study | Engert A, Taylor F, Bennett B, Chen C, Cocks K, McDonald J, Mann E, Sacchi M, Cella D | Presented at 59th American Society of Hematology (ASH) Annual Meeting and Exposition Blood, 2017;130,(1): 3441. | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2017 | Nivolumab versus investigator’s choice therapy among patients with human papillomavirus-associated squamous cell carcinoma of the head and neck: updated results from CheckMate 141 | Gillison ML, Harrington K, Ferris RL, Guigay J, Blumenschein G, Jr., Fayette J, Colevas AD, Kiyota N, Shaw JW, Monga M, Lynch M, Taylor F, DeRosa M, Morrissey L, Cocks K, Saba NF | Presented at AHNS Annual Meeting | Oncology | Psychometric evaluation and statistical analysis of COAs | |
| 2017 | Development of a content-valid patient-reported measure to assess the statin intolerance experience | Jacobson TA, Edelman SV, Galipeau N, Shields AL, Mallya UG, Koren A, Davidson MH | The Patient - Patient-Centered Outcomes Research, 2017;10(3): 321-334. | View Publication | Cardiovascular | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Literature and COA instrument reviews |
| 2017 | Health-related quality of life as a marker of treatment benefit with nivolumab in platinum-refractory patients with metastatic or unresectable urothelial carcinoma from CheckMate 275 | Necchi A, Grimm M, Retz M, Arranz JA, Bracarda S, Bedke J, Baron A, Sharma P, Galsky MD, Vaena D, Kalinka-Warzocha E, Cwikiel M, Pal SK, Morales-Barrera R, Taylor F, Gooden KM, Plimack ER | Presented at American Society of Clinical Oncology Journal of Clinical Oncology, 2017;35(15): 4526-4526. | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2017 | Patient-reported outcomes in DNA mismatch repair deficient/ microsatellite instability-high metastatic colorectal cancer treated with nivolumab: CheckMate 142 | Overman M, Kamble S, Moss RA, Taylor F, Maglinte GA, Shaw JW, Cocks K, Mann E, Yip C, André T | Presented at 19th World Congress on Gastrointestinal Cancer Annals of Oncology, 2017;28(3): III107-III108. | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2017 | Impacts of Glabellar Facial Lines - A Patient Perspective | Solish N, Bertucci V, Hall S, Banderas, B, Foley C, Turner-Bowker DM, Shields AL, Chung C, Rubio RG, Carruthers J | Poster presented at the 75th Annual American Academy of Dermatology (AAD) meeting. Orlando, Florida, USA, 2017 | Dermatology | Qualitative patient-centered research and evaluation of COAs | |
| 2017 | Evaluating the dimensionality of complex PROs using bifactor analysis within an exploratory structural equation modeling framework: an example using the Patient-reported Scar Evaluation Questionnaire | Sen R, Pleil A, Coon C, Shields AL | Poster presented at the ISOQOL, 2017 | Dermatology, Surgery anesthesiology and wound care | Psychometric evaluation and statistical analysis of COAs | |
| 2016.12 | Treatment patterns and clinical practices of advanced (stage IIIB and IV) non-small cell lung cancer (NSCLC) in Europe – A structured literature review | Brodowicz T, Niepel D, Booth E, Hernandez R, Braileanu G, Cawkwell M, Amelio J | Poster presented at the IASLC Conference on Lung Cancer, December 2016 | Oncology | Literature/landscape reviews | |
| 2016.12 | Patient subgroup analyses of Quality of Life Outcomes in Checkmate 205. A Phase 2 study of Nivolumab in patients with Classical Hodgkin Lymphoma | Engert A, Taylor F, Bennett B, Hirji I, Cocks K, McDonald J, Mann E, Kato K, Cella D | Poster presented at ASH, December 2016 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2016.11 | Challenges in the health economics of acute pain: A rapid review of the literature | Braileanu G, Johnson BC, Ashraf S, Borrill J, Hirst M | Poster presented at ISPOR, November 2016. Value in Health vol. 19,7,PA366 | View Publication | CNS/Neurology | Literature/landscape reviews |
| 2016.11 | Structured review of health economic models in asthma | Enstone A, Price G, Viejo I, Dunlop W | Poster presented at ISPOR, November 2016. Value in Health vol. 19,7,PA372 | View Publication | Respiratory diseases | Literature/landscape reviews, Economic models |
| 2016.11 | Network meta-analysis to evaluate the efficacy of ixekizumab in the treatment of moderate-to-severe psoriasis | Hartz S, Walzer S, Dutronc Y, Himatlal Kiri S, Schacht A, Dakin H | Poster presented at ISPOR, November 2016. Value in Health vol. 19,7,PA576 | View Publication | Dermatology, Immunology | Literature/landscape reviews, Evidence synthesis/utility generation |
| 2016.11 | The societal and humanistic burden of small cell lung cancer (SCLC): A systematic review of societal impact and health-related quality of life (HRQoL) literature | Enstone A, Panter C, Greaney MH, Bennett B, Penrod JR, Yuan Y | Poster presented at ISPOR, November 2016. Value in Health vol. 19,7,PA748 | View Publication | Oncology | Literature/landscape reviews |
| 2016.11 | Systematic review of the caregiver burden in melanoma and renal cell carcinoma within Europe | Farrington E, Zagorska A, Burnett J | Poster presented at the Society for Melanoma Research (SMR) congress, November 2016 | Oncology, Nephrology | Literature/landscape reviews, Treatment pathways/burden of illness | |
| 2016.11 | “I Am Always in Pain Somewhere”: Continuing Unmet Need in Rheumatoid Arthritis | Taylor P, Alten R, Gomez-Reino JJ, Caporali R, Bertin P, Grant L, Brohan E, Wells J, Vasilescu R, Tarallo M | Poster presented at American College of Rheumatology Annual Meeting, November 2016 Arthritis and Rheumatology, 2016;68(Supp 10):https://acrabstracts.org/abstract/i-am-always-in-pain-somewhere-continuing-unmet-need-in-rheumatoid-arthritis | View Publication | Musculoskeletal diseases, Immunology | Qualitative patient-centered research and evaluation of COAs |
| 2016.11 | Measuring multiple medication adherence - which measure when? | Pednekar P, Agh T, Malmenas M, Bennett B | Workshop presented at ISPOR, November 2016 | Literature and COA instrument reviews | ||
| 2016.11 | Mode of Administration in Rheumatoid Arthritis Treatments: An Exploration of Patient Preference for an ‘Ideal Treatment’ | Taylor P, Alten R, Gomez-Reino JJ, Caporali R, Bertin P, Grant L, Brohan E, Wells J, Vasilescu R, Tarallo M | Poster presented at American College of Rheumatology Annual Meeting, November 2016 Arthritis and Rheumatology, 2016;68(Supp 10):https://acrabstracts.org/abstract/mode-of-administration-in-rheumatoid-arthritis-treatments-an-exploration-of-patient-preference-for-an-ideal-treatment/ | View Publication | Musculoskeletal diseases, Immunology | Patient preference research |
| 2016.11 | Further validation of the haemopref in a real-world setting | Tolley C, Staunton H, Brohan E, Spurden D, Cicchetti M, Cappelleri JC | Poster presented at ISPOR, November 2016. Value in Health, 2016;19(7):PA383-A384 | View Publication | Hematology | Psychometric evaluation and statistical analysis of COAs |
| 2016.11 | Development and content validity of the advanced systemic mastocytosis symptom assessment form (ADVSM-SAF) | Mazar I, Evans E, Taylor F, Patki A, Ojo O, Lamoureux RE, Horny H, Reiter A, Gotlib J, Shields A | Poster presented ISPOR, November 2016. Value in Health, 2016;19(7): PA386. | View Publication | Oncology | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Literature and COA instrument reviews |
| 2016.11 | Developing a small cell lung cancer conceptual model to inform treatment outcome and assessment strategy decisions in clinical research | Ojo O, Shields AL, Morrissey L, Love E, Ollis S, Halling K, Rudell K | Poster presented ISPOR, November 2016. Value in Health, 2016;19(7): PA747. | View Publication | Oncology | Literature and COA instrument reviews |
| 2016.11 | Psychometric analyses of clinical outcome assessment (COA) questionnaires designed to evaluate satisfaction with pharmacological stress agents (PSAS) used in echocardiography | Spalding J, Hudgens S, Litcher-Kelly L, Shields A, Kitt T, Ojo O, Kristy R, Lee E, Mathias A, Morrissey L, Houle C | Poster presented ISPOR, November 2016. Value in Health, 2016;19(7): PA358. | View Publication | Cardiovascular | Psychometric evaluation and statistical analysis of COAs |
| 2016.1 | Creating clinical outcome assessments on Electronic platforms from the beginning: challenges, consideration and advantages | Arbuckle R, Kilgariff S, Hall R, O’Donohoe P | Poster presented at ISOQOL, October 2016 | Literature and COA instrument reviews, COA instrument development or modification | ||
| 2016.1 | Evidence for the content validity of the EORTC QLQ-C30: Review of existing data | Cocks K, Tolley C, Grant L, Wheelwright S, Tomaszewski K, Groenvold M, Bottomley A, Fitzsimmons D, Velikova G, Aaronson N, Johnson C | Podium presentation at ISOQOL, October 2016 | Oncology | Literature and COA instrument reviews | |
| 2016.1 | Assessing the humanistic burden of menopausal symptoms and estrogen-progestogen therapy side effects among postmenopausal women in the US | Williamson N, Tatlock S, Abraham L, Bushmakin A, Moffatt M | Poster presented at North American Menopause Society conference, October 2016 | View Publication | Women's health | Psychometric evaluation and statistical analysis of COAs |
| 2016.09 | Towards a composite clinical endpoint: Identifying a core set of patient and caregiver relevant outcome measures through qualitative research on the global impact of Dravet syndrome | Nabbout R, Auvin S, Chiron C, Irwin J, Mistry A, Williamson N | Poster presented at European Congress on Epileptology, September 2016 | CNS/Neurology | Qualitative patient-centered research and evaluation of COAs | |
| 2016.09 | Development of a new patient reported outcomes (PRO) measure on the impact of nighttime urination (INTU) in patients with nocturia – psychometric evaluation | Bennett J, Khalaf K, Banderas B, Abrams S, Cheng L, Fein S | Presentation at AUGS PFD Week 2016, Denver, USA, September 27-October 1 2016 | Urology/Urogenital | Psychometric evaluation and statistical analysis of COAs | |
| 2016.07 | Psychometric evaluation of the Self-Assessment of Psoriasis Symptoms (SAPS)-Clinical Trial and the SAPS-Real World Patient-reported outcomes | Armstrong A, Banderas B, Sundaram M, Foley C, Ojo F, Shields AL | Poster presented at the 5th Congress of the Psoriasis International Network (PSO 2016), Paris, France, July 7th-9th, 2016 | View Publication | Dermatology, Immunology | Psychometric evaluation and statistical analysis of COAs |
| 2016.06 | A structured review of health utility measures and elicitation in advanced/metastatic breast cancer | Hao Y, Wolfram V, Cook J | ClinicoEconomics and Outcomes Research, vol. 2016:8, 293—303. June 2016 | View Publication | Oncology | Literature/landscape reviews, Evidence synthesis/utility generation |
| 2016.06 | Health outcome assessment in chronic thromboembolic pulmonary arterial hypertension patients treated with riociguat: 2-year results from the CHEST-2 long-term extension study | Bonner N, Brockmann B, Busse D, de la Orden M, Gater A, Mathai SC, Minai OA, Teal S | Poster presented at PHA Conference, June 2016 | Cardiovascular | Psychometric evaluation and statistical analysis of COAs | |
| 2016.06 | Health outcome assessment in pulmonary arterial hypertension patients treated with riociguat: 2-year results from the PATENT-2 long-term extension study | Bonner N, Brockmann B, Busse D, de la Orden M, Gater A, Mathai SC, Minai OA, Teal S | Poster presented at PHA Conference, June 2016 American Journal of Respiratory and Critical Care Medicine, 2015;191:A4777 | View Publication | Cardiovascular | Psychometric evaluation and statistical analysis of COAs |
| 2016.06 | Quality of life in patients with advanced renal cell carcinoma given nivolumab versus everolimus in CheckMate 025: a randomised, open-label, phase 3 trial | Cella D, Grünwald V, Nathan P, Doan J, Dastani H, Taylor F, Bennett BM, DeRosa M, Berry S, Broglio K, Berghorn E, Motzer RJ | The Lancet Oncology, 17(7):994-1003 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2016.06 | A patient-centred approach to developing patient-reported outcome measures (PROMs): Patients as research partners, not just participants | Panter C, Williamson N, Tatlock S, Hall R, Wells J, Gater A | Poster presented at PROMs Conference, June 2016 | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Literature and COA instrument reviews | ||
| 2016.06 | Patient preference for electronic patient- reported outcomes (PROs): Assessment in patients with psoriatic arthritis (PsA) | Elash CA, Tiplady B, Turner-Bowker DM, Cline J, DeRosa M, Scanlon M | Poster presentation at the DIA 2016 52nd Annual Meeting, Philadelphia, PA, June 26-30 2016 | Immunology, Musculoskeletal diseases | Patient preference research | |
| 2016.06 | The things kids say: Clinical outcome assessments in pediatric clinical trials | Jackson C, Treem W, Turner-Bowker DM, Calarco G, Paty J, Mulberg A | Forum presentation at the DIA 2016 52nd Annual Meeting, Philadelphia, PA, June 26-30 2016 | Pediatric care | Qualitative patient-centered research and evaluation of COAs, Literature and COA instrument reviews | |
| 2016.05 | Web-based budget impact and pricing scenarios planning model: Example from the United Kingdom | Rousseau B, Johnson B, Topachevskyi O, Volovyk A | Poster presented at ISPOR, May 2016. Value in Health vol. 19,3,PA79 | View Publication | Economic models | |
| 2016.05 | Challenges and solutions associated with patient-centered outcomes in rare diseases | Bonner N, Panter C, Spencer H, Braid J, Bennett B | Poster presented at ISPOR, May 2016. Value in Health, 2016;19(3):PA296-A297 | View Publication | Rare diseases | Literature and COA instrument reviews |
| 2016.05 | Development and evaluation of a crosswalk between the EQ-5D-5L and menopause-specific quality of life (MENQOL) questionnaire in postmenopausal women | Bushmakin AG, Tatlock S, Williamson N, Moffatt M, Arbuckle R, Abraham L, Coon C | Poster presented at ISPOR, May 2016. Value in Health, 2016;19(3):PA178 | View Publication | Women's health | Psychometric evaluation and statistical analysis of COAs |
| 2016.05 | Exploring the qualitative experience of chest congestion with children and adults to develop patient-reported outcome items to self-assess symptoms of the common cold | Grant L, Marshall C, Burrows K, Khammo N, Albrecht H, Arbuckle R, Shea T | Poster presented at ISPOR, May 2016. Value in Health, 2016;19(3):PA117 | View Publication | Respiratory diseases, Pediatric care | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2016.05 | What Represents a Meaningful Improvement In Symptom-free Days (SFD) and Rescue-free days (RFD) For Children? Perspectives From Children And Caregivers (Paediatric Asthma: Evaluation and Treatment) | Nelsen LM, Staunton H, Sully K, Khindri S, Svedsater H, Arbuckle R | Poster presented at ATS International Conference, May 2016 American Journal of Respiratory and Critical Care Medicine, 2016;193:A3814 | View Publication | Respiratory diseases, Pediatric care | Qualitative patient-centered research and evaluation of COAs |
| 2016.05 | Evaluation of the psychometric properties of two electronic daily diaries developed to assess breast pain/tenderness and vaginal bleeding/spotting in postmenopausal women on hormone therapy | Tatlock S, Abraham L, Bushmakin AG, Moffatt M, Williamson N, Coon C, Arbuckle R | Poster presented at ISPOR, May 2016. Value in Health, 2016;19(3):PA96 | View Publication | Women's health | Psychometric evaluation and statistical analysis of COAs |
| 2016.05 | Overall survival, health-related quality of life, and healthcare resource use: independent analyses from checkmate 025, a phase iii study of nivolumab versus everolimus in patients with advanced or metastatic clear-cell renal cell carcinoma | Taylor F, Dastani H, Bennett B, DeRosa M, Berghorn E, Justin D | Poster presented at ISPOR, May 2016. Value in Health, 2016;19(3):PA167 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2016.05 | Empowering patient populations with physical or cognitive limitations through electronic clinical outcome assessments (eCOAs) | Tolley C, Garner K, Abel J | Workshop presented at ISPOR, May 2016 | Literature and COA instrument reviews | ||
| 2016.05 | Development and content validation of a patient-reported outcome measure to evaluate statin intolerance in the real-world | Jacobson TA, Edelman SV, Davidson, M, Galipeau N, Shields AL, Mallya UG, Koren A | Poster presented at ISPOR, May 2016. Value in Health, 2016;19(3) PA52. | View Publication | Cardiovascular | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Literature and COA instrument reviews |
| 2016.05 | Evaluating the clinical meaning of the Hidradenitis Suppurativa Clinical Response (HiSCR) | Kimball AB, Sundaram M, Sen R, Naijun C, Shields AL, Gu Y, Okun MM | Poster presented at the 74th Annual Meeting of the American Academy of Dermatology (AAD), Washington DC, USA | View Publication | Dermatology, Immunology | Psychometric evaluation and statistical analysis of COAs |
| 2016.05 | Simultaneous development of PRO questionnaires for use in clinical trials and 'real-world' situations | Shields A, Stokes J, Foley C, Banderas B, Sundaram M | Poster presented at ISPOR, May 2016. Value in Health, 2016;19(3): PA96-A97. | View Publication | Dermatology, Immunology | COA instrument development or modification, Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, Psychometric evaluation and statistical analysis of COAs |
| 2016.05 | Exploring and leveraging known resources to support pediatric clinical outcomes assessment (COA) development | Turner-Bowker D, Krohe M, Banderas CA | Workshop presented at ISPOR, May 2016. | Pediatric care | COA instrument development or modification, Literature and COA instrument reviews | |
| 2016.04 | A qualitative assessment of key symptoms associated with the progression from RRMS to SPMS by physicians and patients | Ziemssen T, Bennett B, Tolley C, Kilgariff S, Simsek D, Lahoz R, Verdun Di Cantogno E | Poster presented at American Academy of Neurology, April 2016 Neurology, 2016;86(16):P2.156 | View Publication | CNS/Neurology, Immunology | Qualitative patient-centered research and evaluation of COAs |
| 2016.02 | Taking the ‘burden’ out of caregiver burden | Grant L, Kilgariff S, Hall R, Braid J, Bennett B | Pharmaphorum.com | View Publication | Literature and COA instrument reviews | |
| 2016.01 | The Quality of Survival (QoS): A concept framework to assist communication and decision-making about cancer care | Fallowfield L, Nadler E, Greaney M, Gater A, Subar M, Orsini L, Lyman GH | Presented at the ASCO Cancer Survivorship meeting, January 2016 | View Publication | Oncology | Literature/landscape reviews, Treatment pathways/burden of illness |
| 2016 | Adherence to topical therapies in actinic keratosis: A literature review | Foley P, Stockfleth E, Peris K, Basset-Seguin N, Cerio R, Sanches JA, Guillen C, Farrington E, Lebwohl M | Journal of Dermatological Treatment, 27:6, 538-545 (2016) | View Publication | Dermatology | Literature/landscape reviews |
| 2016 | BEACON: A summary framework to overcome potential reimbursement hurdles | Dunlop W, Mullins D, Pirk O, Goeree R, Postma M, Enstone A, Heron L | PharmacoEconomics, 34, 1051–1065 (2016) | View Publication | Literature/landscape reviews, HTA/reimbursement, Evidence synthesis/utility generation | |
| 2016 | FP/FORM versus FP/SAL within clinical practice: An updated budget impact analysis in asthma | Farrington E, Saunders A, Heron L, Dunlop W | Advances in Therapy, 33, 794–806 (2016) | View Publication | Respiratory diseases | Economic models |
| 2016 | Treatment patterns of advanced malignant melanoma (stage III-IV) - A review of current standards in Europe | Harries M, Heron L, Malvehy J, Lebbe C et al | Eur J Cancer 60: 179-189 | View Publication | Oncology | Literature/landscape reviews, Treatment pathways/burden of illness |
| 2016 | How to Evaluate Health-Related Quality of Life and Its Association with Medication Adherence in Pulmonary Tuberculosis – Designing a Prospective Observational Study in South Africa | Kastein-Hilka T, Rosenkranz B, Bennett B, Sinanovic E, Schwenkglenks M | Frontiers in Pharmacology, 2016;7:125, doi: 10.3389/fphar.2016.00125 | View Publication | Respiratory diseases | Psychometric evaluation and statistical analysis of COAs |
| 2016 | Clinical Trial Patient-Reported Outcomes Data: Going Beyond the Label in Oncology | Hao Y, Krohe M, Yaworsky A, Shields AL, Mazar I, Foley C, Globe D | Clinical Therapeutics, 2016;38(4): 811-20. | View Publication | Oncology | COA instrument development or modification |
| 2016 | Practical considerations for the use of clinical outcome assessments (COAs) in pediatric clinical research: Examples from pediatric gastroenterology | Kovacs S, Turner-Bowker DM, Calarco G, Mulberg A, Paty J | Therapeutic Innovation & Regulatory Science, 2016;50(1): 37-43. | View Publication | Gastroenterology, Pediatric care | Literature and COA instrument reviews |
| 2016 | Patient-reported outcomes in advanced breast cancer: A review of industry sponsored clinical trials | Krohe M, Hao Y, Lamoureux R, Galipeau N, Globe D, Foley C, Mazar I, Solomon J, Shields AL | Breast Cancer: Basic and Clinical Research, 2016;10: 93-1 | View Publication | Oncology | Literature and COA instrument reviews |
| 2016 | Patient preference for once-weekly dosing in type 2 diabetes mellitus in Japan | Sen R, Shields AL, Atsuda K | Journal of Health Economics and Outcomes Research, 2016;4(1): 55-66. | View Publication | Endocrinology/Metabolic diseases | Patient preference research |
| 2016 | Patient-reported outcomes for oncology product labeling in the US: developing a rationale and navigating early challenges | Shields AL, Hao Y, Krohe M, Yaworsky A, Mazar I, Foley C, Globe DG, Mehmud F | American Health & Drug Benefits, 2016;9(4): 188-197. | View Publication | Oncology | Literature and COA instrument reviews |
| 2016 | Patient-reported outcomes in Oncology Drug Labeling in the United States: A Framework for Navigating Early Challenges | Shields AL, Hao Y, Krohe M, Yaworsky A, Mazar I, Foley C, Globe DG, Mehmud F | American Health & Drug Benefits, 2016;9(4): 188-197. | View Publication | Oncology | Literature and COA instrument reviews |
| 2016 | International validation of the European Ogranisation for Research and Treatment of Cancer QLQ-BRECON23 quality-of-life questionannire for women undergoing breat reconstruction | Winters ZE, Afzal M, Rutherford C, Holzner B, Rumpold G, da Costa Vieira RA, Hartup S, Flitcroft K, Bjelic-Radisic V, Oberguggenberger A, Panouilleres M, Mani M, Catanuto G, Douek M, Kokan J, Sinai P, King MT | Quality of Life Research, 2016;25(Supp 1):302.5 | View Publication | Oncology, Women's health | COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs |
| 2016 | Quality of life (QoL) and overall survival (OS) in patients (pts) with advanced clear-cell renal cell carcinoma (aRCC) treated with nivolumab (NIVI) vs. everolimus (EVE) in the phase III CheckMate 025 study | Cella D, Gruenwald V, Nathan PD, Doan J, Dastani H, Taylor F, Bennett BM, DeRosa M, Berry S, Broglio K, Berghorn E, Motzer RJ | Poster presented at ASCO, Jun 2016. Journal of Clinical Oncology, 2016;34(15):4549 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2016 | Evidence for the content validity of the EORTC QLQ-C30: Review of existing data | Cocks K, Tolley C, Grant L, Wheelwright S, Tomaszewski K, Groenvold M, Bottomley A, Fitzsimmons D, Velikova G, Aaronson N, Johnson C | Quality of Life Research, 2016;25(1):ab303.4 | Oncology | Literature and COA instrument reviews | |
| 2016 | Cultural adaptation: translatability assessment and linguistic validation of the patient-reported outcome instrument for irritable bowel syndrome with diarrhea | Delgado-Herrera L, Lasch, K, Popielnicki A, Nishida A, Arbuckle R, Banderas B, Zentner S, Gagainis I, Zeiher B | Patient Related Outcome Measures, 2016;7:81–92 | View Publication | Gastroenterology | Qualitative patient-centered research and evaluation of COAs |
| 2016 | Assessing asthma symptoms in adolescents and adults: Qualitative research supporting development of the asthma daily symptom diary | Gater A, Nelson L, Fleming S, Lundy J, Bonner N, Hall R, Marshall C, Staunton H, Krishnan J, Stoloff S, Schatz M, Haughney J on behalf of the Patient-Reported Outcome Consortium’s Asthma Working Group | Value in Health, 2016;9:440-450 | View Publication | Respiratory diseases, Pediatric care | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Literature and COA instrument reviews |
| 2016 | Lung Cancer Symptom Scale (LCSS) as a marker of treatment (tx) benefit with nivolumab (nivo) vs docetaxel (doc) in patients (pts) with advanced (adv) non-squamous (NSQ) NSCLC from CheckMate 057 | Gralla RJ, Spigel DR, Bennett B, Taylor F, Penrod JR, DeRosa M, Reck M | Poster presented at ASCO, Jun 2016. Journal of Clinical Oncology, 2016;34(15):9031 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2016 | Health-related quality of life and its association with medication adherence in active pulmonary tuberculosis - a systematic review of global literature with focus on South Africa | Kastein-Hilka T, Abulfathi A, Rosenkranz B, Bennett B, Schwenkglenks M, Sinanovic E | Health and Quality of Life Outcomes, 2016;14:42, https://doi.org/10.1186/s12955-016-0442-6 | View Publication | Respiratory diseases | Literature and COA instrument reviews |
| 2016 | The Humanistic Burden of Small Cell Lung Cancer: A Systematic Review of the Health-Related Quality of Life Literature | Panter C, Bennett BM, Wells J, Yuan Y, Penrod JR | Poster presented at ESMO, Oct 2016. Annals of Oncology, 2016;27(Supp 6)VI495 | View Publication | Oncology | Literature and COA instrument reviews |
| 2016 | What Outcomes are Important for Gout Patients? In-Depth Qualitative Research into the Gout Patient Experience to Determine Optimal Endpoints for Evaluating Therapeutic Interventions | Tatlock S, Rudell K, Panter C, Arbuckle R, Harrold L, Taylor W, Symonds T | Patient, 2016;10:65-79 | View Publication | Musculoskeletal diseases | Qualitative patient-centered research and evaluation of COAs |
| 2016 | Functional Dyspepsia Working Group | Carson R, Shiff SJ, Reasner D, Hanlon J, Lacy BE, Parkman HP, Tack J, Talley N, Shields A, Taylor F, Foley C, Daggett M, Higgins S, Bodart S | Poster presented as the Seventh Annual PRO Consortium Workshop – Silver Spring, MD – April 27-28, 2016 | View Publication | Gastroenterology | COA instrument development or modification |
| 2016 | Patient-reported preferences for oral versus IV administration for the treatment of cancer: a review of the literature | Eek D, Krohe M, Mazar I, Horsfield A, Pompilus F, Friebe R, Shields AL | Patient Preference and Adherence, 2016;10: 1609-1621. | View Publication | Oncology | Literature and COA instrument reviews |
| 2016 | Cognitive testing of an electronic version of the Faces Pain Scale-Revised with pediatric and adolescent sickle cell patients | Gupta N, Naegeli AN, Turner-Bowker DM, Flood EM, Heath LE, Mays SM, Dampier C | Patient, 2016;9(5): 433-43. | View Publication | Hematology, Pediatric care | Qualitative patient-centered research and evaluation of COAs |
| 2016 | Patient-reported outcomes in advanced breast cancer: inside the label and approval documents | Hao Y, Krohe M, Mazar I, Galipeau N, Foley C, Globe D, Turner-Bowker D, Shields AL | Expert Review of Quality of Life in Cancer Care, 2016;1(3): 197-205. | View Publication | Oncology | Literature and COA instrument reviews |
| 2016 | Psychometric evaluation of clinical outcomes assessments in a phase II trial | Huang VW, Banderas B, Sen R | Poster presented at ISPOR, November 2016. Value in Health, 2016;19(7): PA746 | View Publication | Psychometric evaluation and statistical analysis of COAs | |
| 2016 | Responder analyses of droxidopa in patients with symptomatic neurogenic orthostatic hypotension | Rowse GJ, Hewitt A, Shields AL, Freeman R, Kaufmann H | Poster presented at the 68th annual meeting of The American Academy of Neurology Annual Meeting in Vancouver, Canada Neurology, 2016; 86(16): P5.130. | View Publication | CNS/Neurology | Psychometric evaluation and statistical analysis of COAs |
| 2016 | Responder analyses of droxidopa in patients with symptomatic neurogenic orthostatic hypotension | Rowse GJ, Hewitt A, Shields AL, Freeman R, Kaufmann H | Movement Disorders, 2016;30(10): e7. | View Publication | CNS/Neurology | Psychometric evaluation and statistical analysis of COAs |
| 2016 | Development of a symptom-based patient-reported outcome instrument for functional dyspepsia: A preliminary conceptual model and an evaluation of the adequacy of existing instruments | Taylor F, Reasner DS, Carson RT, Deal LS, Foley C, Iovin R, Lundy JJ, Pompilus F, Shields AL, Silberg D, on behalf of the Patient-Reported Outcome Consortium’s Functional Dyspepsia Working Group | The Patient-Patient Centered Outcomes Research, 2016;9: 409. | View Publication | Gastroenterology | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2016 | The Use of Patient-Reported Outcomes in Advanced Breast Cancer Clinical Trials: A Review of the Published Literature | Turner-Bowker D, Hao Y, Foley C, Galipeau N, Mazar I, Krohe M, Globe D, Shields AL | Current Medical Research and Opinion, 2016;32(10): 1709-1717. | View Publication | Oncology | Literature and COA instrument reviews |
| 2016 | Psychometric evaluation of a new patient-reported outcome (PRO) symptom diary for varicose veins: VVSymQ® instrument | Wright DD, Paty J, Turner-Bowker DM, Bradbury A | Patient, 2016;9: 335–348. | View Publication | Cardiovascular | Psychometric evaluation and statistical analysis of COAs |
| 2016 | Development of the multiple sclerosis (MS) Early Mobility Impairment Questionnaire (EMIQ) | Ziemssen T, Phillips G, Shah R, Mathias A, Foley C, Coon C, Sen R, Lee A, Agarwal S | J Neurol, 2016;263(10): 1969-83. | View Publication | CNS/Neurology, Immunology | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs |
| 2015.12 | Content validation and modification of the Treatment Satisfaction Questionnaire for Medication (TSQM) for use in breast cancer | DeBusk K, Maddux L, Turner-Bowker DM, Krupnick R, Skolas K, Patel S, Petersen J | Poster presentation at the San Antonio Breast Cancer Symposium, San Antonio, TX, December 8-12, 2015 Cancer Res, 2016;76(4): P4-11-14. | View Publication | Oncology | COA instrument development or modification |
| 2015.11 | The budget impact of an inhaler with improved features compared to Spiriva® Handihaler® for the management of chronic obstructive pulmonary disease (COPD) in the UK: Estimated impact on unscheduled healthcare costs and inhaler satisfaction | Nicolai J, Torvinen S, Howard DJ, Miles R, Greaney MH, Comberiati U, Plich A | Poster presented at ISPOR, November 2015. Value in Health vol. 18,7,PA497 | View Publication | Respiratory diseases, Medical devices | Economic models |
| 2015.11 | The potential societal cost benefits of increasing patient satisfaction by using an inhaler with improved features compared to Spiriva® Handihaler® for the management of chronic obstructive pulmonary disease (COPD) in the UK | Nicolai J, Torvinen S, Miles R, Greaney MH, Howard DJ, Plich A | Poster presented at ISPOR, November 2015. Value in Health vol. 18,7,PA500 | View Publication | Respiratory diseases, Medical devices | Evidence synthesis/utility generation, Treatment pathways/burden of illness |
| 2015.11 | Clinician-reported insights of insulin degludec use in Germany and four supporting European countries | Seitz L, Lopes S, Vandebrouck T, Parekh WA, Canty E, Robinson A, Ohlson L | Poster presented at ISPOR, November 2015. Value in Health vol. 18,7,PA621 | View Publication | Endocrinology/Metabolic diseases, Immunology | Evidence synthesis/utility generation |
| 2015.11 | Societal burden and impact on health related quality of life (HRQoL) of non-small cell lung cancer (NSCLC) in Europe | Enstone A, Panter C, Manley Daumont M, Miles R | Poster presented at ISPOR, November 2015. Value in Health vol. 18,7,PA690 | View Publication | Oncology | Treatment pathways/burden of illness |
| 2015.11 | Systematic review of the caregiver burden in melanoma and renal cell carcinoma within Europe | Farrington E, Zagorska A, Burnett J | Poster presented at the Society for Melanoma Research (SMR) congress, 2015 | Oncology, Nephrology | Literature/landscape reviews, Treatment pathways/burden of illness | |
| 2015.11 | Development of evidence packages for regulatory and reimbursement submissions in rare diseases: real-world examples | Bonner N, Bowden A, Bal V, Kilburg A | Workshop presented at ISPOR, November 2015 | Rare diseases | Literature and COA instrument reviews | |
| 2015.11 | Development of patient-centered outcomes in rare diseases | Bonner N, MacCulloch A, Bennett B | Poster presented at World Orphan Drug Congress, November 2015 | Rare diseases | Literature and COA instrument reviews, COA instrument development or modification | |
| 2015.11 | Health-related quality of life and treatment satisfaction among patients receiving novel anti-androgen therapies for the treatment of metastatic castrate-resistant prostate cancer (mCRPC) | Dearden L, Shalet N, Artenie C, Mills A, Gater A, Grant L, Jackson C | Poster presented at ISPOR, November 2015. Value in Health, 2015;18(7):PA472 | View Publication | Oncology, Men's health | Qualitative patient-centered research and evaluation of COAs |
| 2015.11 | Assessment of patient-reported health status in pulmonary arterial hypertension patients treated with riociguat: 2-year results from the patent-2 extension study | Mathai SC, Bonner N, Minai OA, Busse D, Brockmann B, Teal S, Gater A, de la Orden M | Poster presented at ISPOR, November 2015. Value in Health, 2015;18(7)PA398 | View Publication | Cardiovascular | Psychometric evaluation and statistical analysis of COAs |
| 2015.11 | Assessment of patient-reported health status in chronic thromboembolic pulmonary arterial hypertension patients treated with riociguat: 2-year results from the chest-2 extension study | Minai OA, Bonner N, Mathai SC, Busse D, Brockmann B, Teal S, Gater A, de la Orden M | Poster presented at ISPOR, November 2015. Value in Health, 2015;18(7):PA398-A399 | View Publication | Cardiovascular | Psychometric evaluation and statistical analysis of COAs |
| 2015.11 | Qualitative interviews to provide in-depth understanding of the impact of non-small cell lung cancer (NSCLC) and its treatment on of the lives of patients and their families/caregivers | Mulatero C, Lal R, Jewitt K, Tolley C, Wells J, Arbuckle R, Lloyd A, Brazier J, Devlin N | Poster presented at ISPOR, November 2015. Value in Health, 2015;18(7):PA469 | View Publication | Oncology | Qualitative patient-centered research and evaluation of COAs |
| 2015.11 | Translatability assessment and linguistic validation of the patient-reported outcome instrument for irritable bowel syndrome with diarrhea (IBS-D PRO) | Popielnicki A, Arbuckle R, Banderas B, Delgado-Herrera L, Gagainis I, Lasch K, Nishida A, Zeiher B, Zentner S | Poster presented at ISPOR, November 2015. Value in Health, 2015;18(7):PA630 | View Publication | Gastroenterology | COA instrument development or modification |
| 2015.11 | Equivalence of paper and electronic administration of patient reported outcomes: a comparison in psoriatic arthritis | Celeste Elash CA, Tiplady B, Turner-Bowker DM, Cline J, DeRosa M, Scanlon M | Podium presentation at ISPOR, November 2015. Value in Health, 2015;18(7): PA342. | View Publication | Dermatology, Immunology, Musculoskeletal diseases | COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs |
| 2015.11 | Health-related quality of life and health care resource use from a phase 3 study of nivolumab versus dacarbazine in patients with treatment-naïve advanced melanoma: CheckMate 066 | Long GV, Taylor F, Gilloteau I, Dastani H, DeRosa M, Abernethy AP | Presented at the Society for Melanoma Research (SMR) 2015 Congress, San Francisco, CA, 18-21 November 2015 | Oncology | Psychometric evaluation and statistical analysis of COAs | |
| 2015.11 | Telephone versus face-to-face interviews for patient-reported outcome instrument development | Mazar I, Lamoureux R, Ojo O, Kevane G, Banderas B, Stokes J, Shields A | Poster presented at ISPOR, November 2015. Value in Health, 2015;18(7): PA718. | View Publication | Literature and COA instrument reviews | |
| 2015.11 | Patient reported outcomes from a phase 3 study of nivolumab alone or combined with ipilimumab (IPI) versus IPI in patients with advanced melanoma: CheckMate 067 | Schadendorf D, Long GV, Larkin J, Wolchok J, Hodi S, Chiarion-Sileni V, Taylor F, Gilloteau I, Dastani HB, Walker D, Rollin L, Abernethy AP | Presented at the Society for Melanoma Research (SMR) 2015 Congress, San Francisco, CA, 18-21 November 2015 | Oncology | Psychometric evaluation and statistical analysis of COAs | |
| 2015.1 | Developing and evaluating electronic clinical outcome assessments (eCOAs) for use in patient populations with substantial physical or cognitive limitations | Tolley C | Poster presented at eCOA Forum Scientific Sessions, October 2015 | CNS/Neurology, Musculoskeletal diseases, Pediatric care | Literature and COA instrument reviews, COA instrument development or modification | |
| 2015.1 | Digital methodologies in the development of clinical outcome assessments | Tolley C, Gater A, Marshall C, Dickie G, Kilgariff S | Poster presented at ISOQOL, October 2015 | Literature and COA instrument reviews, COA instrument development or modification | ||
| 2015.1 | Developing tools for use in clinical practice - a methodological approach | Tolley C, Hall R, Mills K, Bennett B | Poster presented at ISOQOL, October 2015 | Literature and COA instrument reviews, COA instrument development or modification | ||
| 2015.1 | Content development of patient-reported outcome instruments for the measurement of the primary signs and symptoms chronic plaque psoriasis | Armstrong A, Sundaram M, Foley C, Pompilus F, Stokes J, Shields A | Poster presented at ISOQOL, October 2015 | Dermatology, Immunology | COA instrument development or modification | |
| 2015.09 | Quality of survival (QoS) concept framework to assess the quality of prolonged life in advanced melanoma (MEL): Principles and application related to treatment with Nivolumab (NIVO) | Fallowfield L, Nadler E, Abernethy AP, Gilloteau I, Greaney M, Gater A, Orsini L, Subar M, Dastani HB, Lyman GH | Poster presented at the European Cancer Congress, September 2015 | View Publication | Oncology | Literature/landscape reviews, Treatment pathways/burden of illness |
| 2015.09 | Evaluation of disease-related symptoms in patients with advanced squamous non-small cell lung cancer treated with nivolumab or docetaxel | Gralla RJ, Coon C, Taylor F, Penrod JR, DeRosa M, Dastani H, Orsini L, Reck M | Oral presentation presented at: World Conference on Lung Cancer, Denver, USA, 6-9 September 2015 | Oncology | Psychometric evaluation and statistical analysis of COAs | |
| 2015.09 | Evaluation of overall health status in patients with advanced squamous non-small cell lung cancer treated with nivolumab or docetaxel in CheckMate 017 | Reck M, Coon C, Taylor F, DeRosa M, Penrod JR, Dastani H, Orsini L, Gralla R | Oral presentation presented at European Cancer Congress, Vienna, Austria, 25-29 September 2015 Annals of Onocology, 2015;26(SUPPLEMENT 9):IX125. | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2015.07 | Development of a Patient-Reported Outcomes Instrument for the Measurement of Treatment Satisfaction in Plaque Psoriasis | Armstrong A, Sundaram M, Foley C, Pompilus F, Stokes J, Shields AL | Presented at the 4th World Psoriasis & Psoriatic Arthritis Conference. Stockholm, Sweden, July 8-11, 2015. | Dermatology, Immunology | COA instrument development or modification | |
| 2015.06 | Development of a Patient-Reported Outcome Measure in Pancreatic Exocrine Insufficiency (PEI) | Johnson C, Arbuckle R, Bonner N, Connet G, Dominguez-Munoz E, Haeusler J, Levy P, Platon J, Schifflers M, Staab D, Williamson N, Lerch M | Poster presented at European Pancreatic Club, Spain, June 2015 | Endocrinology/Metabolic diseases | COA instrument development or modification | |
| 2015.06 | Psychometric validation of the caregiver burden questionnaire for heart failure (CBQ-HF v4.0) | Strömberg A, Bonner N, Grant L, Bennett B, Chung M, Jaarsma T, Calado F, Deschaseaux C | Poster presented at EuroHeartCare Conference, June 2015 European Journal of Cardiovascular Nursing, 2015;14: S75-S76 | Cardiovascular | Psychometric evaluation and statistical analysis of COAs | |
| 2015.06 | Development of a patient-reported outcomes instrument for the measurement of treatment satisfaction in plaque psoriasis | Armstrong AW, Sundaram M, Foley C, Iovin R, Pompilus F, Stokes J, Shields AL | Poster presented at the 23rd World Congress of Dermatology, Vancouver, Canada, 8-13 June 2015 | View Publication | Dermatology, Immunology | COA instrument development or modification |
| 2015.05 | Development and validation of the angiotensin-converting enzyme inhibitor (ACEI) induced angioedema investigator rating scale and proposed discharge criteria | Bonner N, Kimura A, Panter C, Sinert R, Moellman JJ, Bernstein JA | Poster presented at ISPOR, May 2015. Value in Health, 2015;18(3):PA28 | View Publication | Allergies | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2015.05 | Measuring the symptoms and impacts of endometriosis: psychometric validation of the Endometriosis Symptom Diary and Endometriosis Impact Scale | Gater A, Coon CD, Wichmann K, Hartisch C, Filonenko A, Gerlinger C | Poster presented ISPOR, May 2015 Value in Health, 2015;18(3):PA26 | View Publication | Women's health | Psychometric evaluation and statistical analysis of COAs |
| 2015.05 | Development, scoring and use of a patient questionnaire to measure the practical patient experience within oncology clinical trials | Manson S, Bonner N, Bennett B, Dewit O, Thomas G | Poster presented at ASCO, May 2015. Journal of Clinical Oncology, 2015;33(15): 10.1200/jco.2015.33.15_suppl.e20567 | View Publication | Oncology | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2015.05 | Health Outcome Assessment in Chronic Thromboembolic Pulmonary Arterial Hypertension Patients Treated with Riociguat: 2-Year Results from the CHEST-2 Long Term Extension Study | Minai OA, Bonner N, Odufowora-Sita O, Mathai SC, Busse D, Brockman B, Teal S, Alston T, Joish V, Gater A | Poster presented at American Thoracic Society International Conference May 2015 American Journal of Respiratory and Critical Care Medicine, 2015;191:A4848 | View Publication | Cardiovascular | Psychometric evaluation and statistical analysis of COAs |
| 2015.05 | Health Outcome Assessment in Pulmonary Arterial Hypertension Patients Treated with Riociguat: 2-Year Results from the PATENT-2 Long Term Extension Study | Mathai SC, Odufowora-Sita O, Minai OA, Busse D, Brockman B, Teal S, Alston T, Joish V, Gater A | Poster presented at American Thoracic Society International Conference, May 2015 American Journal of Respiratory and Critical Care Medicine, 2015;191:A4777 | View Publication | Cardiovascular | Psychometric evaluation and statistical analysis of COAs |
| 2015.05 | Effect of nivolumab in combination with ipilimumab versus ipilimumab alone on quality of life in patients with treatment-naïve advanced melanoma: results of a phase II study (CheckMate 069) | Abernethy AP, Postow MA, Chesney JA, Grossmann KF, Taylor F, Coon C, Gilloteau I, Dastani H, Gagnier P, Robert C | Poster presented at ASCO, June 2015. Journal of Clinical Oncology, 2015;33(15): 9029-9029. | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2015.05 | Measuring disease specific impact and symptoms among patients with hidradenitis suppurativa | Kimball A, Sundaram M, Mathias A, Foley C, Shields AL | Poster presented at ISPOR, May 2015. Value in Health, 2015;18(3): PA183-A184. | View Publication | Dermatology | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs |
| 2015.05 | How many subjects are enough for symptom-focused concept elicitation studies? A retrospective analysis of saturation across twenty-six studies | Lamoureux R, Galipeau N, Yaworsky A, Stokes J, Shields AL | Poster presented at ISPOR, May 2015. Value in Health, 2015;18(3): PA33. | View Publication | Qualitative patient-centered research and evaluation of COAs | |
| 2015.05 | Effect of nivolumab on quality of life in patients with treatment-naïve advanced melanoma: results of a phase III study (CheckMate 066) | Long GV, Atkinson V, Ascierto PA, Robert C, Hassel JC, Rutkowski P, Savage KJ, Taylor F, Coon C, Gilloteau I, Waxman I, Abernethy AP | Poster presented at ASCO, June 2015. Annals of Oncology, 2015;26(6): VI28. | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2015.04 | Patient reported burden of asthma on resource use and productivity across 11 countries in Europe | Fletcher M, Jha A, Dunlop W, Heron L, Wolfram V, Van der Molen T, Price D | Adv Ther. 2015 Apr;32(4):370-80 | View Publication | Respiratory diseases | Treatment pathways/burden of illness |
| 2015.04 | The Asthma Working Group: On the Path to Success | Nelsen L, Gater A, Papadopoulos E | Workshop presented at Annual Patient-Reported Outcome Consortium Workshop, April 2015 | View Publication | Respiratory diseases | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2015.03 | Assessing the patient-reported impact of endometriosis: Development of the Endometriosis Symptom Diary and Endometriosis Impact Scale | Gater A, Seitz C, Gerlinger C, Moore A, Hartisch C, Wichmann K | Poster presented at Society for Reproductive Investigation Annual Meeting March 2015 | View Publication | Women's health | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs |
| 2015 | Alcohol dependence, co-occurring conditions and attributable burden | Odlaug BL, Gual A, DeCourcy J, Perry R, Pike J, Heron L, Rehm J | Alcohol and Alcoholism, vol. 51, 2, 201–209 (2016) | View Publication | Addiction | Treatment pathways/burden of illness |
| 2015 | Elicitation of health state utilities associated with varying severities of flare in systemic lupus erythematosus | Hartz S, Liu-Leage S, Paget M, Pollard C, Cook J, Enstone A | Health and Quality of Life Outcomes, 13:66 (2015) | View Publication | Immunology | Evidence synthesis/utility generation |
| 2015 | Development of a conceptual model evaluating the humanistic and economic burden of Crohn’s disease: Implications for patient-reported outcomes measurement and economic evaluation | Gater A, Kitchen H, Heron L, Pollard C, Håkan-Bloch J, Højbjerre L, Bekker Hansen B, Strandberg-Larsen M | Expert Rev Pharmacoecon Outcomes Res 2015, 15(4):643-56 | View Publication | Gastroenterology, Immunology | Literature/landscape reviews, Treatment pathways/burden of illness |
| 2015 | Time to deterioration (TTD) in health-related quality o flife (HRQoL) with carfilzomib plus dexamethasone (Kd56) versus bortezomib plus dexamethasone (Vd) in the ENDEAVOR trail | Weisel K, Ludwig H, Dimopoulos M, Kaiser M, Hajek R, Mikhael J, Cocks K, Panjabi S | Journal of Clinical Oncology, 31(15), e20011 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2015 | Simeprevir added to peginterferon and ribavirin lessens time with fatigue, depressive symptoms and functional limitations in patients with chronic hepatitis C compared with peginterferon and ribavirin: results from 1161 patients in the QUEST-1, QUEST-2 and PROMISE studies | Scott J, Gilles L, Fu M, Brohan E, Panter C, Arbuckle R, Jessner W, Beumont M | Journal of Viral Hepatology, 2015;22(8):639-650 | View Publication | Infectious diseases | Psychometric evaluation and statistical analysis of COAs |
| 2015 | Using Classical Test Theory, Item Response Theory, and Rasch Measurement Theory to Evaluate Patient-Reported Outcome Measures: A Comparison of Worked Examples | Petrillo J, Cano SJ, McLeod LD, Coon CD | Value in Health, 2015;18(1): 25-34. | View Publication | Endocrinology/Metabolic diseases, Ophthalmology | Psychometric evaluation and statistical analysis of COAs |
| 2015 | Patient-reported outcomes for US oncology labeling: review and discussion of score interpretation and analysis methods | Shields AL, Coon C, Hao Y, Krohe M, Yaworsky A, Mazar I, Foley C, Globe D | Expert Review of Pharmacoeconomics & Outcomes Research, 2015;15(6): 951-959. | View Publication | Oncology | Literature and COA instrument reviews |
| 2015 | Patient reported endpoints and the relevance to payers and regulators: Is there agreement? | Trask P, Bal V, Halling, K, Reasner D, Turpin R, Daniels S, Shields A | Invited panel at the 6th Annual Patient-reported Outcome Workshop. Silver Spring, MD USA | Literature and COA instrument reviews | ||
| 2015 | Qualitative cross-cultural exploration of breast symptoms and impacts associated with hormonal treatments for menopausal symptoms to inform the development of new patient-reported measurement tools | Abraham L, Humphrey L, Arbuckle R, Dennerstein L, Simon JA, Mirkin S, Bonner N, Walmsley S, Tatlock S, Symonds T | Maturitas, 2015;80(3):273-281 | View Publication | Women's health | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2015 | Development and content validity testing of a patient-reported outcomes questionnaire for the assessment of hereditary angioedema in observational studies | Bonner N, Abetz-Webb L, Renault L, Caballero T, Longhurst H, Maurer M, Christiansen S, Zuraw B and for the Icatibant Outcome Survey (IOS) International Executive Committee and the Hereditary Angioedema Association (HAEA) Medical Advisory Board | Health and Quality of Life Outcomes, 2015;13:92, https://doi.org/10.1186/s12955-015-0292-7 | View Publication | Genetic diseases, Rare diseases | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2015 | The Intestinal Gas Questionnaire: development of a new instrument for measuring gas-related symptoms and their impact on daily life | Chassany O, Tugaut B, Marrel A, Guyonnet D, Arbuckle R, Duracinsky M, Whorwell PJ, Azpiroz F | Neurogastroenterology and Motility, 2015;27:885-898 | View Publication | Gastroenterology | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2015 | Unique Challenges in Development, Psychometric Evaluation and Interpretation of Daily and Event Diaries as Endpoints in Clinical Trials | Gater A, Coon CD, Nelsen LM, Girman C | Therapeutic Innovation and Regulatory Science, 2015;49(6):813-821 | View Publication | Literature and COA instrument reviews, Psychometric evaluation and statistical analysis of COAs | |
| 2015 | Assessing the Impact of Caring for a Person with Schizophrenia: Development of the Schizophrenia Caregiver Questionnaire | Gater A, Rofail D, Marshall C, Tolley C, Abetz-Webb L, Zarit SH, Berardo CG | Patient, 2015;8:507-520 | View Publication | CNS/Neurology | COA instrument development or modification, Literature and COA instrument reviews |
| 2015 | The humanistic, economic and societal burden of Herpes Zoster in Europe: a critical review | Gater A, Uhart M, McCool R, Préaud E | BMC Public Health, 2015;15:193, https://doi.org/10.1186/s12889-015-1514-y | View Publication | Infectious diseases | Literature and COA instrument reviews |
| 2015 | Development of a Consensus Statement for the Definition, Diagnosis, and Treatment of Acute Exacerbations of Idiopathic Pulmonary Fibrosis Using the Delphi Technique | Maher T, Whyte M, Hoyles R, Parfrey H, Ochiai Y, Mathieson N, Turnbull A, Williamson N, Bennett B | Advances in Therapy, 2015;32:929-943 | View Publication | Respiratory diseases | Literature and COA instrument reviews, COA instrument development or modification |
| 2015 | Development and content validity testing of a patient-reported treatment acceptance measure for use in patients receiving treatment via subcutaneous injection | Tatlock S, Grant L, Spertus J, Khan I, Arbuckle R, Manvelian G, Sanchez R | Value in Health, 2015;18(8):1000-1007 | View Publication | Cardiovascular | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2015 | The feasibility of using electronic clinical outcome assessments in people with schizophrenia and their informal caregivers | Tolley C, Rofail D, Gater A, Lalonde JK | Patient Related Outcome Measures, 2015;6:91-101 | View Publication | CNS/Neurology | COA instrument development or modification |
| 2015 | Development and content validity testing of the patient-reported outcomes of fatigue in cancer (proof-c) symptom severity assessment (SSA) | Yaworsky A, Ojo O, Foley C, Bonthapally V, Ma E, Norquist J, Pompilus F, Pearson J, Park J, Arbuckle R | Poster presented at ISPOR, 2015. Value in Health, 2015;18(3):PA210 | View Publication | Oncology | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2015 | Functional Dyspepsia Working Group | Carson R, Shiff SJ, Reasner D, Hanlon J, Deal L, Silberg DF, Lacy BE, Parkman HP, Tack J, Talley N, Shields A, Taylor F, Pompilus F, Foley C, Daggett M | Poster presented as the Sixth Annual PRO Consortium Workshop – Silver Spring, MD – April 29-30, 2015 | View Publication | Gastroenterology | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs |
| 2015 | Development of a Patient-Reported Outcome Instrument for the Measurement of the Sexual Impacts of Psoriasis | Cather JC, Horn EJ, Foley C, Sundaram M, Iovin R, Pompilus F, Stokes J, AL Shields | Presented at the 73rd Annual Meeting of the American Academy of Dermatology. San Francisco, California, March 20-24, 2015. | Dermatology, Immunology | COA instrument development or modification | |
| 2015 | Expert review on development of patient measure for statin intolerance | Galipaeu N, Foody JM, Sauris A, Edelman SV, Davidson M, Shields AL, Jacobson TA | Poster presented at the American Heart Association’s Quality of Care and Outcomes Research Scientific Sessions. Baltimore, MD USA Cardiovascular Quality and Outcomes, 2015;8: A216. | View Publication | Cardiovascular | Qualitative patient-centered research and evaluation of COAs |
| 2015 | Development and validation of a novel patient-reported treatment satisfaction measure for hyperfunctional facial lines: facial line satisfaction questionnaire | Pompilus F, Burgess S, Hudgens S, Banderas B, Daniels S | J Cosmet Dermatol, 2015;14(4): 274-285. | View Publication | Dermatology | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs |
| 2015 | EVAPIL-R Scale: Continuous development and validation of a tool to assess patient-reported tolerability of different contraceptive methods in longitudinal studies | Clerson P, Graesslin O, Gater A, Taylor F, Filonenko A, Schellschmidt I, Rosen K | Value in Health, 2015;18(8):1000-1007 | View Publication | Women's health | Literature and COA instrument reviews, COA instrument development or modification |
| 2014.11 | Device handling errors and the impact on quality of life and healthcare resource use in asthmatic patients | Jha A, Heron L, Marshall J, Dunlop W | Poster presented at ISPOR, November 2014. Value in Health vol. 17,7,PA599 | View Publication | Respiratory diseases, Medical devices | Literature/landscape reviews, Evidence synthesis/utility generation |
| 2014.11 | Elicitation of health state utilities associated with varying severities of flare in systemic lupus erythematosus | Hartz S, Liu-Leage S, Paget M, Pollard C, Enstone A | Podium presentation at ISPOR, November 2014. Value in Health vol. 17,7,PA331 | View Publication | Immunology | Evidence synthesis/utility generation |
| 2014.11 | Development of a patient-led end of study questionnaire to evaluate the experience of clinical trial participation | Brohan E, Bonner N, Turnbull A, Khan S, Dewit O, Thomas G, Manson S | Poster presented at ISPOR, November 2014. Value in Health, 2014;17(7):PA649 | View Publication | Literature and COA instrument reviews, COA instrument development or modification | |
| 2014.11 | Development, validation and use of observer-reported outcomes in clinical trials: challenges and solutions | Patrick DL, Arbuckle R, Burke L | Workshop presented at ISPOR, November 2014 | Literature and COA instrument reviews, COA instrument development or modification | ||
| 2014.11 | Assessing the methodological value of digital real-time collection of qualitative content in supporting in-depth qualitative interviews exploring the symptoms and impacts of gout on health-related quality of life | Rudell K, Tatlock S, Panter C, Arbuckle R, Symonds T | Poster presented at ISPOR, November 2014. Value in Health, 2014;17(7):PA572 | View Publication | Musculoskeletal diseases | Qualitative patient-centered research and evaluation of COAs |
| 2014.11 | Development and content validity testing of a treatment acceptance measure for use in hypercholesterolemia patients receiving treatment via subcutaneous injection | Tatlock S, Grant L, Arbuckle R, Khan I, Manvelian G, Sanchez R | Poster presented at ISPOR, November 2014 | View Publication | Cardiovascular | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2014.11 | Clinical Outcome Assessment (COA) Instrument Scoring: the Validity and Precision of Unweighted Summary Scores Verse IRT Weighted Scores, and the Added Value of IRT Standard Errors | Coon CD, Lenderking WR | Poster presented at ISPOR, November 2014. Value in Health, 2014;17(7): PA585. | View Publication | Psychometric evaluation and statistical analysis of COAs | |
| 2014.11 | Real world studies using Japanese administrative databases: chronic hepatitis C treatment pattern and resource use | Crawford B, Tang A, Li H, Burns L, Wada K, McDonald J | Poster presented at ISPOR, November 2014. Value in Health, 2014;17(7): PA370-A371. | View Publication | Infectious diseases | Literature and COA instrument reviews |
| 2014.11 | Psychometric analyses to inform item reduction and evaluate sensitivity of the Early Mobility Impairment Questionnaire for multiple sclerosis | Phillips G, Mathias A, Coon C, Agarwal S, Sen R, Shah R, Ziemssen T | Poster presented at ISPOR, November 2014. Value in Health, 2014;17(7): PA403. | View Publication | CNS/Neurology, Immunology | Psychometric evaluation and statistical analysis of COAs |
| 2014.1 | Assessing Patient-Reported Impact of Endometriosis Pain using a 7-day versus Daily Recall Period | Gater A, Wichmann K, Seitz C, Gerlinger C, Taylor F, Chen W, Filonenko A | Poster presented at ISOQOL, October 2014 | Women's health | COA instrument development or modification | |
| 2014.09 | Burden of asthma on resource and productivity in 6 European countries | Fletcher M, Dunlop W, Jha A, Heron L, Van der Molen T, Price D | Poster presented at the European Respiratory Society Congress, September 2014 | View Publication | Respiratory diseases | Treatment pathways/burden of illness |
| 2014.09 | Burden of asthma on resource and productivity in distinct patient clusters | Price D, Dunlop W, Jha A, Heron L, Van der Molen T, Fletcher M | Poster presented at the European Respiratory Society Congress, September 2014 | View Publication | Respiratory diseases | Treatment pathways/burden of illness |
| 2014.09 | Evaluation of the Post-stroke Checklist (PSC): A Follow-up Study in Singapore | Chen C, Ward A, Sanin M, Hilal S, Venketasubramanian N, Gillard P, Walker M, Holloway L, Brainin M | Poster presented at Asia Pacific Stroke Conference, September 2014 | View Publication | Cardiovascular | Psychometric evaluation and statistical analysis of COAs |
| 2014.09 | Psychometric testing of the Early Mobility Impairment Questionnaire for multiple sclerosis | Ziemssen T, Mathias A, Coon C, Agarwal S, Shah R, Phillips G | Poster presented at the 6th Triennial Joint Meeting of ACTRIMS and ECTRIMS, Boston, USA, 10-13 September 2014 | CNS/Neurology, Immunology | Psychometric evaluation and statistical analysis of COAs | |
| 2014.06 | Patient adherence and non-persistence behaviour in real life actinic keratosis (AK) topical treatment in the UK, Germany and France | Erntoft S, Norlin J, Pollard C, Diepgen TL | Poster presented at ISPOR, June 2014. Value in Health vol. 17,3,PA287 | View Publication | Dermatology | Evidence synthesis/utility generation |
| 2014.06 | A European study of the emotional and physical impact of relapse on patients with multiple myeloma | Hulin C, Hansen T, Laurenson S, Lawrence J, Streetly M | Poster presented at the European Haematology Association, June 2014 | Oncology | Evidence synthesis/utility generation | |
| 2014.06 | The burden of relapse on European hematologists treating multiple myeloma | Hansen T, Streetly M, Laurenson S, Lawrence J, Hulin C | Poster presented at the European Haematology Association, June 2014 | Hematology, Oncology | Treatment pathways/burden of illness | |
| 2014.06 | Qualitative research to better understand the experience of Pancreatic Exocrine Insufficiency (PEI) symptoms from the patient perspective | Bonner N, Tolley C, Williamson N, Arbuckle R, Platon J, Haeusler J, Schifflers M | Poster presented at European Pancreatic Club, June 2014 | Endocrinology/Metabolic diseases | Qualitative patient-centered research and evaluation of COAs | |
| 2014.06 | Assessing the content validity of the endometriosis symptom diary and endometriosis impact scale | Gater A, Wichmann K, Seitz C, Gerlinger C, Taylor F, Chen W, Filonenko A | Poster presented at ISPOR, June 2014. Value in Health, 2014;17(3):PA198-A199 | View Publication | Women's health | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs |
| 2014.06 | Development and psychometric evaluation of a canine dermatitis quality of life questionnaire: Results from three clinical trials | Postorino-Reeves N, Brohan E, Tatlock S, Panter C, Amodie D, Gasper S | Poster presented at ISPOR, June 2014. Value in Health, 2014;17(3):PA198 | View Publication | Animal health, Dermatology | Psychometric evaluation and statistical analysis of COAs |
| 2014.06 | Moving Beyond the Traditional Psychometric Validation of New Phase 3 Clinical Outcome Assessments | Kammerman LA, Izem R, Coon C, Johnson LL | Podium presentation at the Drug Information Association 50th Annual Meeting; June 2014. San Diego, CA | View Publication | Psychometric evaluation and statistical analysis of COAs | |
| 2014.06 | Development and validation of the fatigue symptoms and impacts questionnaire – relapsing multiple sclerosis (FSIQ-RMS™) | Stokes J, Schuler R, Yaworsky A, Hunsche E | Poster presented at ISPOR, June 2014. Value in Health, 2014;17(3): PA195-A196. | View Publication | CNS/Neurology, Immunology | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2014.06 | Qualitative assessment of multiple myeloma symptoms and health-related quality of life in relapsed/refractory patients and comparison to the EORTC QLQ-C30 and MY-20, FACT-MM, and MDASI-MM | Trask PC, Taylor F, Shields A, Mehta J, Foley C, Olude O, Lamoureux R, Iovin R, Hsu K | Poster presented at ISPOR, June 2014. Value in Health, 2014;17(3): PA93. | View Publication | Oncology | Qualitative patient-centered research and evaluation of COAs |
| 2014.06 | Cost analysis of implementing expanded umbilical cord blood graft in Canada | Tremblay G, Cohen S, Roy J | Poster presented at ISPOR, June 2014. Value in Health, 2014;17(3): PA227. | View Publication | Women's health, Pediatric care | Economic models |
| 2014.05 | The secondary care cost burden to the NHS associated with the 2012 pertussis outbreak in England | Holbrook T, Coles V, Carroll S, Pollard C, Oakley S | Poster presented at the European Society for Paediatric Infectious Diseases, May 2014 | Infectious diseases, Pediatric care | Treatment pathways/burden of illness | |
| 2014.05 | Development of the Initial Version of the Asthma Daily Symptom Diary | Mocarski M, Gater A, Fleming S, Nelsen LM, Coons SJ on behalf of the Patient-Reported Outcome Consortium’s Asthma Working Group (Asthma WG) | Poster presented at American Thoracic Society International Conference, May 2014 | Respiratory diseases | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification | |
| 2014.05 | Identifying and Measuring the Core Symptoms Reported by Persons with Asthma: A review of the Existing Qualitative Literature and Patient-Reported Outcome Measures | Nelsen LM, Gater A, Hall R, Coons SJ on behalf of the Patient-Reported Outcome Consortium’s Asthma Working Group (Asthma WG) | Poster presented at American Thoracic Society International Conference, May 2014 American Journal of Respiratory and Critical Care Medicine, 2014;189:A4024 | View Publication | Respiratory diseases | Literature and COA instrument reviews |
| 2014.04 | Developing a pediatric COA measurement strategy; a case study in asthma | Arbuckle R | Oral presentation presented at Annual Critical Path Institute Patient-Reported Outcome (PRO) Consortium Workshop, April 2014 | View Publication | Respiratory diseases, Pediatric care | COA instrument development or modification |
| 2014.04 | Functional Dyspepsia Working Group | Carson R, Shiff SJ, Witherspoon B, Belanger V, Deal L, Silberg DF, Shields A, Taylor F, Pompilus F, Foley C, Iovin R, Daggett M | Poster presented at the Fifth Annual PRO Consortium Workshop – Silver Spring, MD – April 29-30, 201 | View Publication | Gastroenterology | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs |
| 2014.03 | In-depth Investigation of Patient-Reported Sexual, Reproductive, and Relationship Impacts of Psoriasis | Cather JC, Horn EJ, Sundaram M, Mukherjee Bal V, Wang K, Iovin R, Foley C, Pompilus F, Shields A | Poster session presented at 72nd Annual Meeting of the American Academy of Dermatology, Denver, Colorado, USA, 21-25 March 2014 | Dermatology, Immunology | Qualitative patient-centered research and evaluation of COAs | |
| 2014.02 | HaemoPREF: A novel questionnaire for evaluating patient perception and preference for haemophilia A treatment | Teal S, Brohan E, Marshall C, Tolley C, Schulz M, Westfeld M, Cappelleri JC | Poster presented at EAHAD February 2014 | View Publication | Hematology | Psychometric evaluation and statistical analysis of COAs |
| 2014 | Dressing-related trauma: Clinical sequelae and resource utilization in a UK setting | Charlesworth B, Pilling C, Chadwick P, Butcher M | Clinicoecon Outcomes Res 2014;6;227-239 | View Publication | Surgery anesthesiology and wound care, Medical devices | Evidence synthesis/utility generation |
| 2014 | Burden of asthma on resource and productivity in 6 European countries | Fletcher M, Dunlop W, Jha A, Heron L, Van der Molen T, Price D | Eur Respir J 2014; 44(50):3816 | View Publication | Respiratory diseases | Treatment pathways/burden of illness |
| 2014 | Burden of asthma on resource and productivity in distinct patient clusters | Price D, Dunlop W, Jha A, Heron L, Van der Molen T, Fletcher M | Eur Respir J 2014; 44(58):3020 | View Publication | Respiratory diseases | Treatment pathways/burden of illness |
| 2014 | Can individual patients assess differences in quality of life between groups of patients? | Cocks K, Velikova G, King MT, Fayers PM, Brown JM | European Journal of Cancer Care, 2014;23(2):483-409 | View Publication | Oncology | Qualitative patient-centered research and evaluation of COAs |
| 2014 | The economic loss of allergic rhinitis associated with nasal congestion | Okamoto Y, Crawford B, Okuizumi K | Iyaku Journal (Medicine and Drug Journal), 2014;50(3):103-111 [Japanese] | Allergies, Immunology | Literature and COA instrument reviews | |
| 2014 | Informing drug development and clinical practice through patient-centered outcomes research | Coon CD, Lau DT | Clinical Therapeutics, 2014;36(5): 616-8. | View Publication | COA instrument development or modification, Literature and COA instrument reviews | |
| 2014 | Development and Validation of the AFSymp™: An Atrial Fibrillation-Specific Measure of Patient-Reported Symptoms | Arbuckle R, Abetz L, Medin J, Halling K, Kulich K, Edvardsson K, Coyne KS | The Patient, 2014;7;319-327 | View Publication | Cardiovascular | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs |
| 2014 | Measuring the symptoms of pediatric constipation and irritable bowel syndrome with constipation: expert commentary and literature review | Arbuckle R, Carson R, Abetz-Webb L, Hyams J, Di Lorenzo C, Lewis B, Gargon E et al | The Patient, 2014;7:343-364 | View Publication | Gastroenterology, Pediatric care | Literature and COA instrument reviews |
| 2014 | Qualitative cross-cultural exploration of vaginal bleeding/spotting symptoms and impacts associated with hormone therapy in post-menopausal women to inform the development of new patient-reported measurement tools | Arbuckle R, Humphrey L, Abraham L, Dennerstein L, Simon JA, Mirkin S, Bonner N, Walmsley S, Tatlock S, Symonds T | Maturitas, 2014;78(3):219-227 | View Publication | Women's health | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2014 | Burden of herpes zoster in the UK: findings from the zoster quality of life (ZQOL) study | Gater A, Abetz-Webb L, Carroll S, Mannan A, Serpell M, Johnson R | BMC Infectious Diseases, 2014;14:402, doi: 10.1186/1471-2334-14-402 | View Publication | Infectious diseases | Psychometric evaluation and statistical analysis of COAs |
| 2014 | Sometimes it’s difficult to have a normal life: Results from a qualitative study exploring caregiver burden in Schizophrenia | Gater A, Rofail D, Tolley C, Marshall C, Abetz-Webb L, Zarit SH, Berardo CG | Schizophrenia Research and Treatment, 2014;:368215, https://doi.org/10.1155/2014/368215 | View Publication | CNS/Neurology | Qualitative patient-centered research and evaluation of COAs |
| 2014 | Clinical value of a patient-reported goal-attainment measure: The global development of self-assessment goal achievement (SAGA) questionnaire for patients with lower urinary tract symptoms | Khullar V, Espuna-Pons M, Marschall-Kehrel D, Fianu-Jonasson A, Kelleher CJ, Brubaker L, Beach J, Piault E, Trocio J | Neurourology and Urodynamics, 2014;33(1):90-94 | View Publication | Urology/Urogenital | |
| 2014 | Burden of post-herpetic neuralgia in a sample of UK residents aged 50 years or older: findings from the Zoster Quality of Life (ZQOL) study. | Serpell M, Gater A, Carroll S, Abetz-Webb L, Mannan A, Johnson R | Health and Quality of Life Outcomes, 2014;12:92, doi: 10.1186/1477-7525-12-92 | View Publication | Infectious diseases | Psychometric evaluation and statistical analysis of COAs |
| 2014 | Development and psychometric evaluation of a novel tool for assessing patient perception and preference for haemophilia treatment (HaemoPREF) | Teal S, Brohan E, Hettema Y, Humphrey L, Willgoss T, Hudgens S, Westfeld M, Cappelleri J | Haemophilia, 2014;20:(5):666-673 | View Publication | Hematology | Psychometric evaluation and statistical analysis of COAs |
| 2014 | Evaluation of the Post Stroke Checklist: a pilot study in the United Kingdom and Singapore | Ward AB, Chen C, Norrving B, Gillard P, Walker MF, Blackburn S, Holloway L, Brainin M, Philp I, Global Stroke Community Advisory Panel (GSCAP) | International Journal of Stroke, 2014;9(A100):76-84 | View Publication | Cardiovascular | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2014 | Development of a New Patient-Reported Outcome Measure for Facial Acne: The Acne Symptom and Impact Scale (ASIS) | Alexis A, Daniels SR, Johnson N, Pompilus F, Burgess SM, Harper JC | J Drugs Dermatol, 2014;13(3): 333-340. | View Publication | Dermatology | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2014 | Psychometric evaluation of a patient-reported treatment satisfaction measure for hyperfunctional facial lines in the upper face | Daniels S, Banderas B, Shields AL, Burgess S | Poster presented at the 72nd annual meeting of the American Academy of Dermatology. Denver, CO USA, 2014 | Dermatology | Psychometric evaluation and statistical analysis of COAs | |
| 2014 | The reliability of the patient-reported scar evaluation questionnaire (PR-SEQ) in a cohort of adults with linear scars | Pleil A, Mathias A, Galipeau N, Shields AL, Jensen J | Poster presented at ISPOR, June 2014. Value in Health, 2014;17(3): PA288. | View Publication | Dermatology, Surgery anesthesiology and wound care | Psychometric evaluation and statistical analysis of COAs |
| 2014 | The impact of upper facial lines and psychological impact of crow’s feet lines: content validation of the Facial Line Outcomes (FLO-11) Questionnaire | Yaworsky A, Daniels S, Tully S, Beddingfield F, Kowalski J, Fitzgerald K, Somogyi C, Burgess S | J Cosmet Dermatol, 2014;13(4): 297-306. | View Publication | Dermatology | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2013.12 | Qualitative assessment of symptoms and functional impact in relapsed/refractory multiple myeloma patients and comparison to the EORTC QLQ-C30 and MY-20, FACT-MM, and MDASI-MM | Trask P, Taylor F, Shields A, Gallagher M, Mehta J, Foley C, Olude F, Lamoureux R, Iovin R, Hsu K | Poster session presented at 55th American Society of Hematology Annual Meeting and Exposition, New Orleans, LA, 7-10 December 2013 Blood, 2013;122(21): 2989. | View Publication | Oncology | Qualitative patient-centered research and evaluation of COAs |
| 2013.11 | Budget impact analysis of a new fixed-dose combination inhaler for a clinical commissioning group within the National Health Service in England | Dunlop W, Heron L, Fox G, Greaney M | Poster presented at ISPOR, November 2013. Value in Health vol. 16,7,PA368 | View Publication | Respiratory diseases, Medical devices | Economic models |
| 2013.11 | Patient-reported outcome measures for systemic lupus erythematosus clinical trials: A content validity and psychometric performance review | Humphrey L, Heron L, Pilling C, Holloway L, Højbjerre L, Strandberg-Larsen M, Hansen BB | Poster presented at ISPOR, November 2013. Value in Health vol. 16,7,PA600-A601 | View Publication | Immunology | Literature/landscape reviews, Evidence synthesis/utility generation, Treatment pathways/burden of illness |
| 2013.11 | The value of pilot testing PRO symptom diaries prior to conducting cognitive debriefing interviews in children/ adolescents: qualitative and quantitative insights | Arbuckle R, Holloway L, Carson RT, Dennee-Sommers B, Abetz-Webb L | Poster presented at ISPOR, November 2013. Value in Health, 2013;16(7):PA607 | View Publication | Gastroenterology, Pediatric care | COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs |
| 2013.11 | A parent-administered but child-completed Patient-Reported Outcome (PRO) provides a measure with content validity that is valid and reliable for use in children aged 6 to 11 years | Arbuckle R, Marshall C | Poster presented at ISPOR, November 2013. Value in Health, 2013;16(7):PA338 | View Publication | Pediatric care | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs |
| 2013.11 | How burdensome is completion of electronic Patient-Reported Outcomes (ePRO)? Item completion times and qualitative evidence from studies in four different health conditions | Arbuckle R, Tolley C, Burbridge C | Poster presented at ISPOR, November 2013. Value in Health, 2013;16(7):PA604 | View Publication | CNS/Neurology, Women's health, Pediatric care, Gastroenterology | COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs |
| 2013.11 | Evaluating fatigue in fibromyalgia: development and validation of the daily Diary of Fatigue Symptoms in Fibromyalgia (DFS-Fibro) | Burbridge C, Symonds T, Humphrey L, Arbuckle R, Hirsch I, Whelan L | Poster presented at ISPOR, November 2013. Value in Health, 2013;16(7):PA626 | View Publication | CNS/Neurology | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs |
| 2013.11 | PRO claims in Japanese oncology product labeling | Crawford B | Poster presented at ISPOR, November 2013. Value in Health, 2013;16(7):PA421 | View Publication | Oncology | Literature and COA instrument reviews |
| 2013.11 | Development of the schizophrenia caregiver questionnaire: modification of the zarit burden interview informed by qualitative insights | Gater A, Rofail D, Tolley C, Marshall C, Abetz-Webb L, Zarit SH, Galani Berardo C | Poster presented at ISPOR, November 2013. Value in Health, 2013;16(7):PA577 | View Publication | CNS/Neurology | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2013.11 | Assessing the patient-reported symptoms and impacts of endometriosis: Development of the Endometriosis Symptom Diary (ESD) and Endometriosis Impact Scale (EIS) | Gater A, Wichmann K, Seitz C, Gerlinger C, Taylor F | Poster presented at European Congress on Endometriosis, November 2013 | Women's health | COA instrument development or modification | |
| 2013.11 | The effect of medical devices with dose-memory and reminder functions on patients' treatment adherence confidence and disease self-management | Hall R, Harald-Kongsø J, Humphrey L, Willgoss T | Poster presented at ISPOR, November 2013. Value in Health, 2013;16(7):PA336 | View Publication | Medical devices | Literature and COA instrument reviews |
| 2013.11 | Agreement between child and parent symptom diary responses in Chronic Constipation (CC) and Irritable Bowel Syndrome with Constipation (IBS-C): implications for the measurement of symptoms in young children | Holloway L, Arbuckle R, Carson RT, Dennee-Sommers B, Abetz-Webb L | Poster presented at ISPOR, November 2013. Value in Health, 2013;16(7):PA499 | View Publication | Gastroenterology, Pediatric care | COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs |
| 2013.11 | Herpes zoster in Europe: a review of evidence documenting humanistic, economic and societal burden | McCool R, Gater A, Préaud E, Baron-Papillon F, Largeron N | Poster presented at ISPOR, November 2013. Value in Health, 2013;16(7):PA622 | View Publication | Infectious diseases | Literature and COA instrument reviews |
| 2013.11 | Patients with chronic hepatitis C virus treated with simeprevir added to peginterferon and ribavirin experienced less time with fatigue, depressive symptoms, and functional limitations: results from patients in the quest-1, quest-2, and promise studies | Scott J, Gilles L, Fu M, Brohan E, Amatya R, Jessner W, Beumont-Mauviel | Poster presented at ISPOR, November 2013 | View Publication | Infectious diseases | Psychometric evaluation and statistical analysis of COAs |
| 2013.11 | Item refinement and psychometric testing of a novel survey for evaluating patient perception and preference for haemophilia A treatment | Teal SA, Brohan E, Hettema Y, Humphrey L, Willgoss T, Hudgens S, Westfeld M, Cappelleri JC | Poster presented at ISPOR, November 2013. Value in Health, 2013;16(7):PA597 | View Publication | Hematology | Psychometric evaluation and statistical analysis of COAs |
| 2013.11 | Determining the magnitude of a detectable and a relevant treatment benefit in aesthetic medicine using a photoguide and the internet | Pleil AM, Bushmakin AG, Shields AL, Jensen J, Cappelleri JC | Poster presented at ISPOR, November 2013. Value in Health, 2013;16(7): PA603. | View Publication | Surgery anesthesiology and wound care | Psychometric evaluation and statistical analysis of COAs |
| 2013.11 | Exploratory structural equation models: a simulation study exploring geomin and target rotation techniques on variations of ESEM models | Sen R | Poster presented at ISPOR, November 2013. Value in Health, 2013;16(7): PA588. | View Publication | Psychometric evaluation and statistical analysis of COAs | |
| 2013.1 | Disease state preference study in the UK general public for late-stage chronic lymphocytic leukaemia | Tolley K, Goad C, Yi Y, Maroudas P, Caravotas L, Thompson G | Eur J Health Econ 2013 Oct;14(5):749-59 | Oncology | Evidence synthesis/utility generation | |
| 2013.1 | Utilization pattern and healthcare resource evaluation of Japanese insulin initiators during their first year | Ikeda S, Yeung CK, Sato M, Crawford B | Presentation at the Asian Annual Conference on Pharmacoepidemiology, October 2013 | View Publication | Endocrinology/Metabolic diseases | Psychometric evaluation and statistical analysis of COAs |
| 2013.1 | The use of creative exercises to maximise content drawn from concept elicitation interviews used to develop symptom and health-related quality of life measures in pediatric populations with chronic disease | Arbuckle R, Abetz-Webb L | Oral presentation at ISOQOL, October 2013 | View Publication | Pediatric care | Qualitative patient-centered research and evaluation of COAs |
| 2013.1 | The Development and Validation of Clinician-Reported Outcome Instruments: The Application of Methods from Patient-Reported Outcomes | Arbuckle R, Kitchen H, Tatlock S | Workshop presented at ISOQOL, October 2013 | View Publication | COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs | |
| 2013.1 | Real-world resource utilization and costs following hospitalization of patients with heart failure and preserved ejection fraction in five regions of China | Li X, Crawford B, Wang D, Deschaseaux C, Liu L | Poster presented at Great Wall International Congress of Cardiology, October 2013 Cardiovascular Disease Clinical Research, 2013;99(Supp 3):A213-A214 | View Publication | Cardiovascular | Literature and COA instrument reviews |
| 2013.1 | In-depth Investigation of Patient-Reported Sexual, Reproductive, and Relationship Impacts of Psoriasis | Cather JC, Horn EJ, Sundaram M, Mukherjee Bal V, Wang K, Iovin R, Foley C, Pompilus F, Shields A | Poster session presented at 22nd Congress of the European Academy of Dermatology and Venereology, Istanbul, Turkey, October 2-6, 2013 | Dermatology, Immunology | Qualitative patient-centered research and evaluation of COAs | |
| 2013.09 | “It was easier than dealing with a pen and paper...”: Exploring the usability of electronic devices for completion of clinical outcome assessments (COAs) in Schizophrenia | Tolley C, Rofail D, Gater A, Lalonde J | Poster presented at European Conference on Schizophrenia Research, September 2013 | View Publication | CNS/Neurology | COA instrument development or modification |
| 2013.08 | Comparative efficacy and safety of novel oral anticoagulants in patients with atrial fibrillation: A network meta-analysis with the adjustment for the possible bias from open label studies | Morimoto T, Crawford B, Wada K, Ueda S | Poster presented at European Society of Cardiology, August/September 2013 | Cardiovascular | Literature and COA instrument reviews | |
| 2013.06 | Early mobility impairment: bridging the communication gap between people with multiple sclerosis and their healthcare providers | Anderseck B, Van Asch P, Johnson J, Agarwal S, Hudgens S, Humphrey L, Medcalf R, Ziemssen T | Poster presented at Meeting of the European Neurological Society, June 2013 | View Publication | CNS/Neurology, Immunology | COA instrument development or modification |
| 2013.06 | Utility and willingness to pay for lung cancer treatments: Patient versus general population values in Thailand | Thongprasert S, Permsuwan U, Sakulbumrungsil R, Chaiyakunapruk N, Crawford B, Petcharapiruch S, Leartsakulpanitch J | Poster presented at HTAi, June 2013 | Oncology | Evidence synthesis/utility generation | |
| 2013.06 | Systematic review of the practice patterns and burden among patients with hemophilia in Japan | Wada K, Crawford B, Lee CW, Krishnan S | Poster presented at International Society of Thrombosis and Haemostasis, Congress, June/July 2013 | Hematology | Literature and COA instrument reviews | |
| 2013.05 | Exploring the humanistic and economic burden of Crohn's disease: Considerations for novel compounds | Hansen BB, Kitchen H, Heron L, Gater A, Walmsley S, Pollard C, Højbjerre L, Strandberg-Larsen M | Poster presented at ISPOR, May 2013. Value in Health vol. 16,3,PA43 | View Publication | Gastroenterology, Immunology | Treatment pathways/burden of illness |
| 2013.05 | Patient burden associated with wet age-related macular degeneration in Japan | Adachi K, Wang ECY, Kudo K, Crawford B, Fujita K, Nagai Y, Arisawa A, Hiramoto Y, Fujii S, Uda S, Takahashi K, Yuzawa M | Poster presented at ISPOR, May 2013. Value in Health, 2013;16(3):PA179 | View Publication | Ophthalmology | Psychometric evaluation and statistical analysis of COAs |
| 2013.05 | Interviews with patients with chronic hepatitis C virus infection document unmet needs, content validity, and comprehension of PROs for clinical trials | Blackburn S, McCool R, Panter C, Young V, Peterson S, Mitchell L, Machouf N, Scott J, Humphrey L | Poster presented at ISPOR, May 2013. Value in Health, 2013;16(3):PA6 | View Publication | Infectious diseases | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2013.05 | Assessing caregiver burden in caregivers of people with Schizophrenia: Development of the Schizophrenia Caregiver Questionnaire (SCQ) | Gater A, Rofail D, Tolley C, Marshall C, Abetz L, Zarit SH, Berardo CG | Poster presented at American Psychiatric Association, May 2013; IPS, American Psychiatric Association, October 2013 | CNS/Neurology | Literature and COA instrument reviews, COA instrument development or modification | |
| 2013.05 | Sometimes it’s difficult to have a normal life: Results from a qualitative study exploring caregiver burden in Schizophrenia | Gater A, Rofail D, Tolley C, Marshall C, Abetz-Webb L, Zarit SH et al | Poster presented at Annual Meeting, American Psychiatric Association, May 2013 IPS, American Psychiatric Association, October 2013 | CNS/Neurology | Qualitative patient-centered research and evaluation of COAs | |
| 2013.05 | Assessing health-related quality of life (HRQoL) in major depressive disorder (MDD): do commonly used instruments meet EMA requirements for psychometric properties and content relevance | Danchenko N, Rive B, Pendlebury S, Abetz L | Poster presented at ISPOR, May 2013. Value in Health, 2013;16(3): PA64. | View Publication | CNS/Neurology | Literature and COA instrument reviews |
| 2013.05 | The effect of vortioxetine on health-related quality of life (HRQoL) in patients with major depressive disorder (MDD) | Florea I, Danchenko N, Loft H, Rive B, Pendlebury S, Abetz L | Poster presented at ISPOR, May 2013. Value in Health, 2013;16(3): PA65. | View Publication | CNS/Neurology | Literature and COA instrument reviews |
| 2013.05 | Use of the functional assessment of cancer therapy-anemia (FACT-AN) instrument in persons with MPN-associated myelofibrosis and anemia | Hudgens S, Gale RP, Tencer T, Khan Z | Poster presented at ISPOR, May 2013. Value in Health, 2013;16(3): PA148. | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2013.05 | Health-related quality of life and productivity impact of myelodysplastic syndromes (MDS): The patient perspective | Komrokji R, Mahmoud D, Hudgens S, Taylor F, Pompilus F, Hwang S, Beach CL | Poster session presented at 12th International Symposium on Myelodysplastic Syndromes, Berlin, 8-11 May 2013 Blood, 2013;120(21): 4705. | View Publication | Hematology, Oncology | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs |
| 2013.05 | Is a picture worth a thousand words? The development of a clinician and patient reported photonumeric guide to assess scar severity | Pleil A, Jensen J, Galipeau N, Taylor F, Pompilus F, Shields AL | Poster presented at ISPOR, May 2013. Value in Health, 2013;16(3): PA31. | View Publication | Surgery anesthesiology and wound care | COA instrument development or modification |
| 2013.05 | Fatigue severity scale: reliability, validity and interpretation of change - evidence from two clinical trials in patients with chronic HCV infection | Scott J, Rosa K, Fu M, Cerri K, Peeters M, Beumont-Mauviel M, Gilles L, Blackburn S | Poster presented at ISPOR, May 2013. Value in Health, 2013;16(7): PA588. | View Publication | Infectious diseases | Psychometric evaluation and statistical analysis of COAs |
| 2013.05 | Evaluating and improving methods for cognitive debriefing PRO questionnaires | Stokes J, Yaworsky A, Galipeau N, Pompilus F, Foley C, Lamoureux R, Lovin R, Shields A | Poster presented at ISPOR, May 2013. Value in Health, 2013;16(3): PA47. | View Publication | Literature and COA instrument reviews | |
| 2013 | Budget impact analysis of a fixed-dose combination of fluticasone propionate and formoterol fumarate (FP/FORM) in a pressurized metered-dose inhaler (pMDI) for asthma | Dunlop W, Heron L, Fox G, Greaney M | Advances in Therapy, vol. 30, 933–944 (2013) | View Publication | Respiratory diseases, Medical devices | Economic models |
| 2013 | Cost-effectiveness of modified-release prednisone in the treatment of moderate to severe rheumatoid arthritis with morning stiffness based on directly elicited public preference values | Dunlop W, Iqbal I, Khan I, Ouwens M, Heron L | Clinic Econ Outcomes 2013; 5:555-564 | View Publication | Musculoskeletal diseases, Immunology | Economic models, Evidence synthesis/utility generation |
| 2013 | Perceptions of usability and design for prefilled insulin delivery devices for patients with type 2 diabetes | Heron L, Reaney M, Hermanns N, Abetz L, Gregg L | Diabetes Spectr Winter 2013;26:16 | View Publication | Endocrinology/Metabolic diseases, Medical devices | Evidence synthesis/utility generation |
| 2013 | Utility elicitation study in the UK general public for late-stage chronic lymphocytic leukaemia | Tolley K, Goad C, Yi Y, Maroudas P, Thompson G | The European Journal of Health Economics, 14, 749–759 (2013) | View Publication | Oncology | Evidence synthesis/utility generation |
| 2013 | Sample size calculations for pilot randomised trials: a confidence interval approach | Cocks K, Torgerson D | Journal of Clinical Epidemiology, 2013;66(2):197-201 | View Publication | Psychometric evaluation and statistical analysis of COAs | |
| 2013 | Real-world characterization of hypertension patients in Japan: A 1-Year overview | Crawford B, Ong SH, Falvey H | Asian Journal of Pharmaceutical and Clinical Research, 2013;6 (suppl 4):93-96 | View Publication | Cardiovascular | Psychometric evaluation and statistical analysis of COAs |
| 2013 | The effect of medical device dose-memory functions on patients’ adherence to treatment, confidence, and disease self-management | Hall R, Willgoss T, Humphrey L, Kongsø JH | Patient Preference and Adherence, 2013;8:775-788 | View Publication | Medical devices | Literature and COA instrument reviews |
| 2013 | Economic impact of venous thromboembolism following major orthopedic surgery in Japan | Takai S, Akagi M, Crawford B, Ichinohe S, Majima T, Mikami H, Niki Y, Tanaka S, Tsumura H | Value in Health, 2013; Regional Issue 2: 81-8 | View Publication | Cardiovascular, Surgery anesthesiology and wound care | Psychometric evaluation and statistical analysis of COAs |
| 2013 | Psychometric performance of a new patient-reported psoriasis symptom diary | Nyirady J, Mallya UG, Guettner A, Papavassilis C, Strober BE, Gottlieb AB, Lebwohl M, Gwaltney CJ, Turner-Bowker DM, Shields AL | Value in Health, 2013;16(6): 1014-1022. | View Publication | Dermatology, Immunology | Psychometric evaluation and statistical analysis of COAs |
| 2013 | Effectiveness of alcohol treatment interventions integrated into routine tuberculosis care in Tomsk, Russia | Shin S, Livchits V, Smith Connery H, Shields AL, Fitzmaurice G, Nelson A, Greenfield S | Addiction, 2013;108(8): 1387-1396 | View Publication | Respiratory diseases, Addiction | Psychometric evaluation and statistical analysis of COAs |
| 2013 | Training and fidelity monitoring of alcohol treatment interventions integrated into routine tuberculosis care in Tomsk, Russia: the IMPACT effectiveness trial | Smith Connery H, Greenfield SF, Livchits V, McGrady L, Patrick N, Lastimoso C, Hart J, Nelson AK, Shields AL et al. on behalf of the Tomsk Tuberculosis Alcohol Working Group | Substance Use and Misuse, 2013;48(9): 784-792. | View Publication | Respiratory diseases, Addiction | Literature and COA instrument reviews |
| 2013 | Patient reported outcomes are changing the landscape in oncology care: Challenges and opportunities for the payer | Zagadailov E, Fine M, Shields AL | American Health & Drug Benefits, 2013;6(5): 264–274. | View Publication | Oncology | Literature and COA instrument reviews |
| 2013 | “Not just little adults”: Qualitative methods to support the development of pediatric patient-reported outcomes | Arbucke R, Abetz-Webb L | The Patient, 2013;6(3):143-159 | View Publication | Pediatric care | Literature and COA instrument reviews, COA instrument development or modification, Qualitative patient-centered research and evaluation of COAs |
| 2013 | Health-related quality of life of women with menopausal hot flushes and night sweats | Ayers B, Hunter MS | Climacteric, 2013;16(2):235-239 | View Publication | Women's health | Psychometric evaluation and statistical analysis of COAs |
| 2013 | Development and validation of the living with pulmonary hypertension questionnaire in pulmonary arterial hypertension patients | Bonner N, Abetz L, Meunier J, Sikirica M, Mathai SC | Health and Quality of Life Outcomes, 2013;11:161, doi: 10.1186/1477-7525-11-161 | View Publication | Cardiovascular | COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs |
| 2013 | Challenges in quantifying the patient-reported burden of herpes zoster and post-herpetic neuralgia in the UK: learnings from the Zoster Quality of Life (ZQOL) study | Carroll S, Gater A, Abetz-Webb L, Smith F, Demuth D, Mannan A | BMC Research Notes, 2013;6:486, https://doi.org/10.1186/1756-0500-6-486 | View Publication | Infectious diseases | Psychometric evaluation and statistical analysis of COAs |
| 2013 | Mental Illness: Clinicians' Attitudes (MICA) scale-psychometric properties of a version for healthcare students and professionals | Gabbidon J, Clement S, van Nieuwenhuizen A, Kassam A, Brohan E, Norman I, Thornicroft G | Psychiatry Research, 2013;206(1):81-72 | View Publication | CNS/Neurology | Psychometric evaluation and statistical analysis of COAs |
| 2013 | Validation of the COPD Population Screener (COPD-PS) and establishment of diagnostic cut-points in Japan | Inoue H, Momi H, Tsukuya G, Fukuyama S, Samukawa T, Kiyohara Y, Nakamura T, Crawford B, Ichinose M, Matsumoto K, Nakanishi N, on behalf of the Hisayama Pulmonary Physiology Study Group | American Journal of Respiratory and Critical Care Medicine, 2013;187:A2952 | View Publication | Respiratory diseases | Psychometric evaluation and statistical analysis of COAs |
| 2013 | European content validation of the Self-Assessment Goal Achievement (SAGA) questionnaire in patients with overactive bladder | Khullar V, Marschall-Kehrel D, Espuna-Pons M, Kelleher C, Tully S, Piault E, Brubaker L, Fianu-Jonasson A, Weinstein D, Bergqvist A, Kvasz M | International Urogynecology Journal, 2013;24(9):1529-1536 | View Publication | Urology/Urogenital | COA instrument development or modification |
| 2013 | Functional Dyspepsia Working Group | Carson R, Shiff SJ, Dennee-Sommers B, Gordon G, Deal L, Silberg DF, Shields A, Taylor F, Pompilus F, Foley C, Iovin R, Daggett M | Poster presented at the Fourth Annual PRO Consortium Workshop – Silver Spring, MD – April 24-25, 2013 | View Publication | Gastroenterology | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs |
| 2013 | In-depth Investigation of Patient-Reported Sexual, Reproductive, and Relationship Impacts of Psoriasis | Cather JC, Horn EJ, Sundaram M, Mukherjee Bal V, Wang K, Foley C, Pompilus F, Shields A | Poster presented at the 22nd Annual European Academy of Dermatology and Venereology, Belgrade, Serbia, 2013 | Dermatology, Immunology | Qualitative patient-centered research and evaluation of COAs | |
| 2013 | Patient- and clinician-reported satisfaction with pharmacological stress agents for single photon emission computed tomography (SPECT) myocardial perfusion imaging (MPI) | Hudgens S, Breeze J, Spalding J | J Med Econ, 2013;16(6): 828-34. | View Publication | Cardiovascular | Psychometric evaluation and statistical analysis of COAs |
| 2013 | Patients’ experiences with Hidradenitis Suppurativa: A qualitative study of symptoms and impacts | Kimball AB, Sundaram M, Mukherjee Bal V, Okun M | Poster session presented at 71st Annual Meeting of the Amercian Academy of Dermatology, Miami, Florida, March 1-5, 2013 | Dermatology | Qualitative patient-centered research and evaluation of COAs | |
| 2013 | The effect of ruxolitinib therapy on myelofibrosis-related symptoms and other patient-reported outcomes in COMFORT-I: a randomized, double-blind, placebo-controlled trial | Mesa RA, Gotlib J, Gupta V, Catalano JV, Deininger MW, Shields AL, Miller CB, Silver RT, Talpaz M, Winton EF, Harvey JH, Hare T, Erickson-Viitanen S, Sun S, Sandor V, Levy RS, Kantarjian MN, and Verstovsek S on behalf of all COMFORT-I Investigators | Journal of Clinical Oncology, 2013;31(10): 1285-1292. | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2013 | Progressive burden of myelofibrosis in untreated patients: an assessment of patient-reported outcomes in patients randomized to placebo in the COMFORT-I study | Mesa RA, Shields AL, Hare T, Erickson-Viitanen S, Sun W, Sarlis NJ, Sandor V, Levy RS, Verstovsek S | Leukemia Research, 2013;37(8): 911-916. | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2013 | Association of health-related quality of life and neurocognitive function with progression free survival and progressive disease in patients with glioblastoma: A review of the literature | Shields AL, Burgess S, Ravelo A, Taylor F, Mazar I, Abrey L | Poster presented at the 17th European Cancer Congress, Amsterdam, Netherlands, 2013 | Oncology | Literature and COA instrument reviews | |
| 2013 | Development of a questionnaire to assess the impact of chronic low back pain for use in regulated clinical trials | Stokes J, Evans CJ, Pompilus F, Shields AL, Summers KH | Patient, 2013;6(4): 291-305. | View Publication | Musculoskeletal diseases | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2012.12 | Exploring the humanistic and economic burden of Crohn’s Disease: Considerations for novel compounds | Kitchen H, Heron L, Gater A, Walmsley S, Pollard C, Hansen BB, Højbjerre L, Strandberg-Larsen M | Poster presented at Advances in Inflammatory Bowel Diseases Crohn's & Colitis Foundation's National Clinical & Research Conference, December 2012 | Gastroenterology, Immunology | Treatment pathways/burden of illness | |
| 2012.11 | Gaining reimbursement of orphan products in Europe: Challenges due to wide variations in evidence requirements and processes | Heron L, Laurenson S, Costello J, Anderl C, Knospe J | Poster presented ISPOR, November 2012. Value in Health vol. 15,7,PA308 | View Publication | Rare diseases | Evidence synthesis/utility generation |
| 2012.11 | Using clinical outcome assessments and economic data to facilitate patient access in rheumatoid arthritis | Gater A, Kitchen H, Heron L, Hansen BB, Højbjerre L, Strandberg-Larsen M | Poster presented at ISPOR, November 2012. Value in Health vol. 15,7,PA484 | View Publication | Musculoskeletal diseases, Immunology | Evidence synthesis/utility generation |
| 2012.11 | Understanding disease presentation and patient-reported and economic impact of herpes zoster and post-herpetic neuralgia: findings from the zoster quality of life study | Carroll S, Gater A, Abetz L, Demuth D, Smith F, Mannan A | Poster presentation at ISPOR, November 2012 Value in Health; 2012;15(7):A514 | View Publication | Infectious diseases | Psychometric evaluation and statistical analysis of COAs |
| 2012.11 | A novel conceptual model of caregiver burden in chronic heart failure: a qualitative study | Blackburn S, Humphrey L, Maguire L, Deschaseaux C, Strömberg A | Poster presented at ISPOR, November 2012. Value in Health, 2012;15():A378 | View Publication | Cardiovascular | Qualitative patient-centered research and evaluation of COAs |
| 2012.11 | Development and validation of a patient-reported outcomes questionnaire for the assessment of hereditary angioedema in observational studies | Bonner N, Abetz L, Renault L, Caballero T | Poster presented at ISPOR, November 2012. Value in Health, 2012;15(7):PA558 | View Publication | Genetic diseases, Rare diseases | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2012.11 | Content validity of a treatment satisfaction questionnaire in non-Hodgkin’s lymphoma | Campbell A, Wiesner C, Garcia EB, Tatlock S, Humphrey S | Poster presented at ISPOR, November, 2012. Value in Health, 2012;15(7):A480 | View Publication | Oncology | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2012.11 | Understanding disease presentation and patient-reported and economic impact of herpes zoster and post-herpetic neuralgia: findings from the zoster quality of life study | Carroll S, Gater A, Abetz L, Demuth D, Smith F, Mannan A | Poster presented at ISPOR, November 2012. Value in Health, 2012;15(7):PA514 | View Publication | Infectious diseases, CNS/Neurology | Psychometric evaluation and statistical analysis of COAs |
| 2012.11 | Assessing gas-related symptoms and their associated impact on the daily life of the general population and irritable bowel syndrome patients: international development of a questionnaire – qualitative steps | Tugaut B, Guyonnet D, Arbuckle R, Azpiroz F, Chassany O, Whorwell P, Marrel A | Poster presented at ISPOR, November 2012. Value in Health, 2012;15(7):PA332 | View Publication | Gastroenterology | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2012.11 | Development and validation of patient reported endpoints for T2DM | Bron M, Hudgens S, Stokes J, Banderas B, Viswanathan P, Dabbous O | Poster presented at ISPOR, November 2012. Value in Health, 2012;15(7): PA503-A504. | View Publication | Endocrinology/Metabolic diseases | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs |
| 2012.11 | Patient-Reported Outcomes (PROs) in antineoplastic product approvals in Europe and in the USA | Patrick D, Acquadro C, Teschendorf B, Emery MP, Caron M, Arnould B | Poster presented at ISPOR, November 2012. Value in Health, 2012;15(7): PA431. | View Publication | Oncology | Literature and COA instrument reviews |
| 2012.11 | Do scars impact beyond just appearance? A report of the concept elicitation phase in the development of the patient reported scar evaluation questionnaire | Pleil A, Jensen J, Galipeau N, Olude O, Klemm M, Shields AL | Poster presented at ISPOR, November 2012. Value in Health, 2012;15(7): PA573. | View Publication | Surgery anesthesiology and wound care | Qualitative patient-centered research and evaluation of COAs |
| 2012.1 | EVAPIL-R scale: validation of tool to assess tolerability of different contraceptive methods in longitudinal studies | Clerson P, Graesslin O, Gater A, Taylor F, Rofail D, Filonenko A, Schellschmidt I, Rosen K | Poster presented at FIGO World Congress of Gynaecology and Obstetrics, October 2012 Gynecology & Obstetrics, 119:S3:S575 | View Publication | Women's health | Psychometric evaluation and statistical analysis of COAs |
| 2012.1 | An interactive overview of using Computer-Assisted Qualitative Data Analysis Software (CAQDAS) in Health Outcomes Research | Kitchen H, Marshall C | Workshop presented at ISOQOL, October 2012 | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs | ||
| 2012.1 | The Post-Stroke Checklist: A Tool for Standardizing Long-Term Patient Follow Up | Ward A, Chen C, Norrving B, Gillard P, Walker M, Blackburn S, Brainin M, Philp I, on behalf of the Global Stroke Community Advisory Board | Presented at the 8th Annual World Stroke Congress, Brasilia, Brazil, October 10-13 2012 | Cardiovascular | COA instrument development or modification | |
| 2012.09 | A Conceptual Model for Binge Eating Disorder Based on Literature Review, Expert Insights, and Patient Interviews | Supina D, Shields AL, Stokes J, Taylor F, Pompilus F, Delbecque L, Erder MH | Poster session presented at: Eating Disorders Research Society, 18th Annual Meeting, Porto, Portugal, 20-22 September 2012 | View Publication | Endocrinology/Metabolic diseases | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs |
| 2012.09 | Introduction to Patient-Reported Outcomes | Crawford B, Yao K | Short course presented at ISPOR, September 2012 | View Publication | Literature and COA instrument reviews, COA instrument development or modification | |
| 2012.09 | Using Mapped EQ-5D from disease-specific measures in cost-utility analysis: What is the current state in Asia Pacific? | Leartsakulpanitch J, Crawford B, Lee EK, Chiou CF | Issue panel presented at ISPOR, September 2012 | Economic models | ||
| 2012.07 | Adherence to oral tyrosine kinase inhibitor therapies in chronic myeloid leukemia | Gater A, Heron L, Abetz-Webb L, Coombs J, Simmons J, Guilhot F, Rea D | Leuk Res 2012 Jul;36(7):817-25 | View Publication | Oncology | Literature/landscape reviews, Evidence synthesis/utility generation |
| 2012.06 | Patient burden associated with wet age-related macular degeneration in Japan | Adachi K, Wang ECY, Kudo K, Crawford B, Fujita K, Nagai Y, Arisawa A, Hiramoto Y, Fujii S, Uda S, Takahashi K, Yuzawa M | Poster presented at ISPOR, 2-6 June 2012. Value in Health, 2013;16(3):PA179 | View Publication | Ophthalmology | Psychometric evaluation and statistical analysis of COAs |
| 2012.06 | Pediatric patient-report outcomes and pediatric clinical trial design: challenges and solutions | Arbuckle R, Tassinari MS, Carson RT, Baird M | Workshop presented at ISPOR, June 2012 | Pediatric care | Literature and COA instrument reviews, COA instrument development or modification | |
| 2012.06 | Assessing Health-Related Quality of Life (HRQoL) in Major Depressive Disorder (MDD): do commonly used instruments meet EMA requirements for psychometric properties and content relevance | Danchenko N, Rive B, Pendlebury S, Abetz L | Poster presented at ISPOR, June 2012. Value in Health, 2013;16(3):PA64 | View Publication | CNS/Neurology | Psychometric evaluation and statistical analysis of COAs |
| 2012.06 | The effect of vortioxetine (LU AA21004) on Health-Related Quality of Life (HRQoL) in patients with Major Depressive Disorder (MDD) | Florea I, Danchenko N, Loft H, Rive B, Pendlebury S, Abetz L | Poster presented at ISPOR, June 2012 | CNS/Neurology | Literature and COA instrument reviews | |
| 2012.06 | Real world patient profile of patients with Reduced Ejection Fraction Heart Failure (HF-REF) in 5 regions of China | Li XY, Crawford B, Liao YH, Wang D, Sung JC, Zheng J, McDonald J | Poster presented at ISPOR, June 2012. Value in Health, 2012;15(7):A129-A130 | View Publication | Cardiovascular | Literature and COA instrument reviews |
| 2012.06 | Psychometric validation of the tummy tuck questionnaire | Abrams S, Hudgens S, Banderas B, Krishnan S, Ito D, Li-McLeod J | Poster presented at ISPOR, June 2012. Value in Health, 2012;15(4): PA203. | View Publication | Surgery anesthesiology and wound care | Psychometric evaluation and statistical analysis of COAs |
| 2012.06 | Review of the content validity of the patient-reported outcome measures used in patients with brain metastases | Fitzgerald K, Ganguli A, Bonthapally V, Pompilus F, Delbecque L, Lasch KE, Ray S | Poster presented at ISPOR, June 2012. Value in Health, 2012;15(4): PA227. | View Publication | Oncology | Literature and COA instrument reviews |
| 2012.06 | Use of the Functional Assessment of Cancer Therapy-Anemia (FACT-AN) instrument in persons with MPN-associated myelofibrosis and anemia | Hudgens S, Gale RP, Tencer T, Khan Z | Poster presented at ISPOR, June 2012. National Library of Science, 2014;36(4): 560-6. | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2012.06 | Utilization of Rasch measurement models for assessing validity: a mixed methods approach | Hudgens S, Globe D, Burgess S M | Workshop presented at ISPOR, June 2012 | Psychometric evaluation and statistical analysis of COAs | ||
| 2012.06 | Development of a patient-reported outcome instrument in brain metastases: the Brain Metastases Symptom and Impact Questionnaire (BASIQ) | Lasch KE, Ganguli A, Bonthapally V, Pompilus F, Delbecque L, Fitzgerald K, Ray S | Podium presentation at ISPOR, June 2012. Value in Health, 2012;15(4): PA1. | View Publication | Oncology | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2012.06 | Progressive worsening of patient-reported outcomes in untreated patients with myelofibrosis | Mesa R, Shields AL, Hare T, Erickson-Viitanen S, Sun W, Verstovsek S | Poster presented at ISPOR, June 2012. Value in Health, 2012;15(4): PA227. | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2012.06 | Evaluating meaningful change on the lung cancer symptom scale in small cell lung cancer: results from a phase III clinical trial | O'Brien M, Hudgens S, King J, McNally R, Khan Z | Poster presented at ISPOR, June 2012. Value in Health, 2012;15(4): PA227-A228. | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2012.05 | Elicitation of health state utilities associated with different durations of morning stiffness in rheumatoid arthritis | Iqbal I, Dasgupta B, Taylor P, Heron L, Pilling C | Poster presented at the British Society for Rheumatology, May 2012 | Musculoskeletal diseases, Immunology | Evidence synthesis/utility generation | |
| 2012.05 | Listening to children’s and parents’ voices: using patient-reported outcomes to empower patients with orphan diseases and their parents | Abetz-Webb A, Arbuckle R | Workshop presented at 6th European Conference on Rare Diseases & Orphan Products, May 2012 | View Publication | Rare diseases, Pediatric care | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs |
| 2012.05 | Systematic Review of Pain Measurement Strategies to Support Product Labeling in US Regulated Clinical Trials | Shields AL, Stokes J, Caron M, Emery M | Poster session presented at: 31st Annual Conference of the American Pain Society, Honolulu, USA, 16-19 May 2012 The Journal of Pain, 2012;13(4): S6. | View Publication | CNS/Neurology | Literature and COA instrument reviews |
| 2012.04 | Selection and development of Clinical Outcome Assessments (COAs) for use in pediatric clinical trials | Tassinari MS, Wang P, Abetz L, Patrick D, Rofail, D, Lee J, Papadopoulos E | Oral presentation at Third Annual Patient-Reported Outcome Consortium Workshop, April 2012 | View Publication | Pediatric care | Literature and COA instrument reviews, COA instrument development or modification |
| 2012.02 | Hepatitis C in Asia: prevalence and complications | Crawford B, Tanaka E, Yeung CK, Hwang S, Leteneux C, Kraemer M, Wang YJ, Chanatitarat C | Poster session presented at Asian Pacific Association for the Study of the Liver conference, Taipei, Taiwan, 17–19 February 2012 | View Publication | Infectious diseases | Literature and COA instrument reviews |
| 2012.02 | Real-world costs of Reduced Ejection Fraction Heart Failure (HF-REF) from 5 regions of China | Li XY, Liao YH, Crawford B, Tanaka E, Wang D, Ariely R, Zheng J, McDonald J | Poster session presented at: Asia-Pacific Congress of Heart Failure, Chiang Mai, Thailand, 3–5 February 2012 Value in Health, 2012;15(4): PA129-A130. | View Publication | Cardiovascular | Literature and COA instrument reviews |
| 2012 | Cognitive impairment associated with schizophrenia: A review of the humanistic burden | Kitchen H, Rofail D, Heron L, Sacco P | Adv Ther 2012;29:148 | View Publication | CNS/Neurology | Treatment pathways/burden of illness |
| 2012 | Elicitation of health state utilities associated with different durations of morning stiffness in rheumatoid arthritis | Iqbal I, Dasgupta B, Taylor P, Heron L, Pilling C | J Med Econ 2012;15:1192 | View Publication | Musculoskeletal diseases, Immunology | Evidence synthesis/utility generation |
| 2012 | Elicitation of health state utilities associated with different durations of morning stiffness in rheumatoid arthritis | Iqbal I, Dasgupta B, Taylor P, Heron L, Pilling C | Journal of Medical Economics Vol. 15, 6, 1192-1200 (2012) | View Publication | Musculoskeletal diseases, Immunology | Evidence synthesis/utility generation |
| 2012 | Service user attachments to psychiatric key workers and teams | Arbuckle R, Berry K, Taylor JL | Social Psychiatry and Psychiatric Epidemiology, 2012;47:817-825 | View Publication | CNS/Neurology | Psychometric evaluation and statistical analysis of COAs |
| 2012 | Evidence-based guidelines for interpreting change scores for the European Organisation for the Research and Treatment of Cancer Quality of Life Questionnaire Core 30 | Cocks K, King MT, Velikova G, de Castro G, Jr., Martyn St-James M, Fayers PM, et al | European Journal of Cancer, 2012;48(11):1713-1721 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2012 | Hepatitis C Virus in Asia: utility values based on the Short Form-36 Questionnaire (SF-36) | Crawford B, Yeung CK, Tanaka E, Kraemer M, Leteneux C | Expert Review of Pharmacoeconomics and Outcomes Research, 2012;12:765-773 | View Publication | Infectious diseases | Literature and COA instrument reviews, Psychometric evaluation and statistical analysis of COAs |
| 2012 | Association between public views and reactions to mental illness and self-stigma among individuals in 14 European countries | Evans-Lacko S, Brohan E, Mojtabai R, Thornicroft G | tries. Psychological Medicine, 2012;42:1741-1752 | View Publication | CNS/Neurology | Psychometric evaluation and statistical analysis of COAs |
| 2012 | Nutrition education and counselling provided during pregnancy: effects on maternal, neonatal and child health outcomes | Girard AW, Olude O | Paediatric and Perinatal Epidemiology, 2012;26(Supp 1):191-204 | View Publication | Women's health, Pediatric care | Literature and COA instrument reviews |
| 2012 | A decision aid to assist decisions on disclosure of mental health status to an employer: Protocol for the CORAL exploratory randomised controlled trial | Henderson C, Brohan E, Clement S, Williams P, Lassman F, Schauman O, Murray J, Murphy C, Slade M, Thornicroft G | BMC Psychiatry, 2012;12:133, doi: 10.1186/1471-244X-12-133 | View Publication | CNS/Neurology | |
| 2012 | The bladder pain/interstitial cystitis symptom score: development, validation, and identification of a cut score | Humphrey L, Arbuckle R, Moldwin R, Nordling J, van de Merwe J P, Meunier J, Crook T, Abraham L | European Urology, 2012;61:271-279 | View Publication | Urology/Urogenital | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs |
| 2012 | Stigma and discrimination: critical human rights issues for mental health | Randall J, Thornicroft G, Brohan E, Kassam A, Lewis-Holmes E | s. Oxford University Press, Oxford 2012 | CNS/Neurology | Literature and COA instrument reviews | |
| 2012 | Factors contributing to the success of folic acid public health campaigns | Rofail D, Colligs A, Abetz L, Lindemann M, Maguire L | Journal of Public Health (Oxf), 2012;34(1):90-99 | View Publication | Women's health | Literature and COA instrument reviews |
| 2012 | Development and validation of patient-reported endpoints for T2DM | Bron M, Hudgens S, Stokes J, Banderas B, Viswanathan P, Dabbous O | Value in Health, 2012;15: A503. | View Publication | Endocrinology/Metabolic diseases | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs |
| 2012 | Evaluating meaningful change on the lung cancer symptom scale in small cell lung cancer: results from a phase III clinical trial | O'Brien M, Hudgens S, King J, McNally R, Khan Z | Value in Health, 2012;15: A227. | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2012 | Evaluation of the willingness-to-pay for cancer treatment in Korean metastatic breast cancer patients: a multicenter, cross-sectional study | Oh DY, Crawford B, Kim SB, Chung HC, McDonald J, Lee SY, Ko SK, Ro J | Asia Pac J Clin Oncol, 2012;8: 282. | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2012 | Patient-Reported Outcomes (PROs) in antineoplastic product approvals in Europe and in the USA | Patrick D, Acquadro C, Teschendorf B, Emery MP, Caron M, Arnould B | Value in Health, 2012;15: A431. | View Publication | Oncology | Literature and COA instrument reviews |
| 2012 | The impact of Chronic Constipation (CC) on children and adolescents: results from qualitative research (FR) | Arbuckle R, Abetz L, Carson R T, Baird M J, Shiff,S J, Johnson J M, Bonner N | Quality of Life Research, 2012;20:59 | Gastroenterology, Pediatric care | Qualitative patient-centered research and evaluation of COAs | |
| 2012 | Do media messages change people's risk perceptions for binge drinking? | Ayers B, Myers LB | Alcohol and Alcoholism, 2012;47:52-56 | View Publication | Addiction | Psychometric evaluation and statistical analysis of COAs |
| 2012 | Effectiveness of group and self-help cognitive behavior therapy in reducing problematic menopausal hot flushes and night sweats (MENOS 2): a randomized controlled trial | Ayers B, Smith M, Hellier J, Mann E, Hunter MS | Menopause, 2012;19:749-759 | View Publication | Women's health | Psychometric evaluation and statistical analysis of COAs |
| 2012 | Cognitive behaviour therapy for menopausal hot flushes and night sweats: A qualitative analysis of women's experiences of group and self-help CBT | Balabanovic J, Ayers B, Hunter MS | Behavioural and Cognitive Psychotherapy, 2012;4:441-457 | View Publication | Women's health | Qualitative exit and in-trial interviews |
| 2012 | Women's experiences of group cognitive behaviour therapy for hot flushes and night sweats following breast cancer treatment: an interpretative phenomenological analysis | Balabanovic J, Ayers B, Hunter MS | Maturitas, 2012;72:236-242 | View Publication | Oncology, Women's health | Qualitative exit and in-trial interviews |
| 2012 | A novel conceptual model of caregiver burden in chronic heart failure: a qualitative study | Blackburn S, Humphrey L, Maguire L, Deschaseaux C, Strömberg A | Value in Health, 2012;15:A378 | View Publication | Cardiovascular | Qualitative patient-centered research and evaluation of COAs |
| 2012 | The Caregiver Burden Questionnaire for Chronic Heart Failure (CBQ-CHF): development and validation | Blackburn S, Strömberg A, Humphrey L, Maguire L, Deschaseaux C | Journal of Cardiac Failure, 2012;18(8):S83 | View Publication | Cardiovascular | COA instrument development or modification |
| 2012 | The impact of Irritable Bowel Syndrome with Constipation (IBS-C) on children and adolescents: results from qualitative research (FR) | Bonner N, Arbuckle R, Abetz L, Carson R T, Baird M J, Shiff,S J, Johnson J M | Quality of Life Research, 2012;20:97-98 | Gastroenterology, Pediatric care | Qualitative patient-centered research and evaluation of COAs | |
| 2012 | Systematic review of beliefs, behaviours and influencing factors associated with disclosure of a mental health problem in the workplace | Brohan E, Wheat K, Henderson C, Malcolm E, Barley E, Clement S, Slade M, Thornicroft G | BMC Psychiatry, 2012;12:11, doi: 10.1186/1471-244X-12-11 | View Publication | CNS/Neurology | Literature and COA instrument reviews |
| 2012 | Development and psychometric properties the Barriers to Access to Care Evaluation scale (BACE) related to people with mental ill health | Clement S, Brohan E, Jeffery D, Henderson C, Hatch S L, Thornicroft G | BMC Psychiatry, 2012;12:36, doi: 10.1186/1471-244X-12-36. | View Publication | CNS/Neurology | Psychometric evaluation and statistical analysis of COAs |
| 2012 | Development and validation of the self-completed ascites impact measure to understand patient motivation for requesting a paracentesis | Crawford B, Piault E, Gotlieb W, Joulain F | Patient Relatated Outcome Measures, 2012;3:21-30 | View Publication | Oncology | Literature and COA instrument reviews, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs |
| 2012 | Reliability and Validity of the Japanese Version of the Children’s Depression Rating Scale-Revised (CDRS-R) [in Japanese] | Denda K, Fujii Y, Nakato Y, Kako Y, Tanaka T, Crawford B | Saishin Seishin Igaku (Newest Psychiatric Medicine), 2012;17 (1):51-58 | View Publication | CNS/Neurology | Psychometric evaluation and statistical analysis of COAs |
| 2012 | The effects of household food production strategies on the health and nutrition outcomes of women and young children: a systematic review | Girard AW, Self JL, McAuliffe C, Olude O | Paediatric and Perinatal Epidemiology, 2012;26:205-222 | View Publication | Endocrinology/Metabolic diseases, Pediatric care, Women's health | Literature and COA instrument reviews |
| 2012 | Health-Related Quality of Life, Treatment Satisfaction, Adherence and Persistence in β-Thalassemia and Myelodysplastic Syndrome Patients with Iron Overload Receiving Deferasirox: Results from the EPIC Clinical Trial | Porter J, Bowden DK, Economou M, Gater A et al | Anemia, 2012;2012:297641, https://doi.org/10.1155/2012/297641 | View Publication | Hematology, Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2012 | The impact of spina bifida on caregivers | Rofail D, Maguire L, Heelis R, Colligs A, Lindemann M, Abetz L | Neurology and Therapy, 2012;1:4, https://doi.org/10.1007/s40120-012-0004-8 | View Publication | CNS/Neurology | Literature and COA instrument reviews |
| 2012 | Patients' experience of asthma control and clinical guidelines: Perspectives from a qualitative study | Rudell K, Hareendran A, Bonner N, Arbuckle R, Burbridge C, Abetz L | Respiratory Medicine, 2012;106:909-911 | View Publication | Respiratory diseases | Qualitative patient-centered research and evaluation of COAs |
| 2012 | Anticipated discrimination among people with schizophrenia | Uçok A, Brohan E, Rose D, Sartorius N, Leese M, Yoon CK, Plooy A, Ertekin BA, Milev R, Thornicroft G; INDIGO Study Group | Acta Psychiatrica Scandinavica, 2012;125:77-83 | View Publication | CNS/Neurology | Qualitative patient-centered research and evaluation of COAs |
| 2012 | Content validity of the PedsQL™ 3.2 diabetes module in newly diagnosed patients with type 1 diabetes mellitus ages 8-45 | Varni JW, Curtis BH, Abetz LN, Lasch KE, Piault EC, Zeytoonjian AA | Quality of Life Research, 2012;22(8):2169-2181 | View Publication | Endocrinology/Metabolic diseases | COA instrument development or modification |
| 2012 | Psychometric validation of the tummy tuck questionnaire | Abrams S, Hudgens S, Banderas B, Krishnan S, Ito D, Li-McLeod J | Value in Health, 2012;15: A203. | View Publication | Surgery anesthesiology and wound care | Psychometric evaluation and statistical analysis of COAs |
| 2012 | Review of the content validity of the patient-reported outcome measures used in patients with brain metastases | Fitzgerald K, Ganguli A, Bonthapally V, Pompilus F, Delbecque L, Lasch KE, Ray S | Value in Health, 2012;15: 227. | View Publication | Oncology | Literature and COA instrument reviews |
| 2012 | Content Assessment of the Facial Line Outcomes (FLO-11) Questionnaire (MT) | Fitzgerald K, Yaworsky A, Daniels S, Galipeau N, Kornstein A, Evans C, Misra-Burgess S | Qual Life Res, 2012;20: 66. | Dermatology | COA instrument development or modification | |
| 2012 | Evaluating a measure of tanning abuse and dependence | Hillhouse J, Baker M, Turrisi R, Shields AL, Stapleton J, Jain S, Longacre I | Archives of Dermatology, 2012;148(7): 815-819. | View Publication | Dermatology | Psychometric evaluation and statistical analysis of COAs |
| 2012 | Development of a patient-reported outcome measure and a clinician-reported outcome measure to assess satisfaction and preference with pharmacological stress agents for single photon emission computed tomography myocardial perfusion imaging | Hudgens S, Kothari S, Spalding J | Qual Life Res, 2012;20: 30. | Cardiovascular | COA instrument development or modification | |
| 2012 | Evaluating the impact of patient recruitment and retention practices | Lamberti M J, Mathias A, Myles J, Howe D, Getz K | Drug Inf J, 2012;46: 573. | View Publication | Literature and COA instrument reviews | |
| 2012 | Using primary patient data to identify the symptoms of brain metastases to develop a patient-reported outcome measure | Lasch KE, Fitzgerald K, Ganguli A, Bonthapally V, Pompilus F, Delbecque L, Ray S | J Clin Oncol, 2012;30: e12515. | View Publication | Oncology | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs |
| 2012 | The progressive burden of myelofibrosis (MF) in untreated patients: An assessment of patient reported outcomes in placebo-treated patients from COMFORT-1 | Mesa R, Shields AL, Hare T, Erickson-Viitanen S, Sun W, Verstovsek S | Poster presented at the 17th Congress of the European Hematology Association (EHA). Amsterdam, Netherlands, 2012 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2012 | Pushing the boundaries of quality of life research: using patients’ words in a gap analysis of PRO measures | Mukherjee Bal V, Lasch K | Qual Life Res, 2012;20: 13. | Literature and COA instrument reviews, COA instrument development or modification | ||
| 2012 | Development of a post stroke checklist to standardize long-term stroke care | Philp I, Brainin M, Walker M, Ward A, Gillard P, Shields AL, Norrving B and the Global Stroke Community Advisory Board | Journal of Stroke and Cerebrovascular Diseases, 2012;12: S1052-3057. | View Publication | Cardiovascular | COA instrument development or modification |
| 2012 | Linguistic validation of translation of the Self-Assessment Goal Achievement (SAGA) questionnaire from English | Piault E, Doshi S, Brandt BA, Angün Ç, Evans CJ, Bergqvist A, Trocio J | Health Qual Life Outcomes, 2012;23(10): 40. | View Publication | COA instrument development or modification | |
| 2011.12 | Associations between improvements in Myelofibrosis (MF) symptoms and quality of life measures with splenomegaly reduction in COMFORT-I: A randomized, double-blind, phase III trial of the JAK1 and JAK2 inhibitor ruxolitinib versus placebo in patients with MF | Mesa RA, Gotlib J, Gupta V, DiPersio J, Catalano J, Deininger M, Shields AL, Miller C, Silver R, Talpaz M, Winton E, Harvey J, Hare T, Erickson-Viitanen S, Sun W, Sandor V, Levy R, Kantarjian H, and Verstovsek S on behalf of all COMFORT-I Investigators | Poster presented at the 53rd annual meeting of the American Society of Hematology. San Diego, CA, USA, 10-13 December 2011 Blood, 2011;118(21): 3842. | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2011.11 | Guidelines for pharmacoeconomic evaluation for Serbia | Novakovic T, Tesic D, Stefanovic D, Medic G, Sovtic D | Poster presented at ISPOR, November 2011. Value in Health vol. 14,7,PA358 | View Publication | Literature/landscape reviews, Economic models | |
| 2011.11 | Medico-economic analysis of the impact of malnutrition on the post-operative course of colorectal cancer patients | Preaud E, Melchior JC, Carles J, Brami M, Duru G, Fontaine E, Hébuterne X, Lukacs B, Zazzo JF, Panis Y, Nitenberg G | Poster presented at ISPOR, November 2011. Value in Health vol. 14,7,PA262 | View Publication | Oncology | Evidence synthesis/utility generation |
| 2011.11 | Relative efficacy of bivalirudin vs. Heparin alone in STEMI patients treated with primary PCI – An indirect treatment comparison | Medic G, Schwenkglenks M, Eijgelshoven I, Smith A, Day J, Plent S, Bergman G, Toward T | Poster presented at ISPOR, November 2011. Value in Health vol. 14,7,PA367 | View Publication | Cardiovascular | Evidence synthesis/utility generation, Psychometric evaluation and statistical analysis of COAs, Literature and COA instrument reviews |
| 2011.11 | The impact of regulatory (FDA and EMA) and EUNETHTA guidelines on patient-reported outcomes and health-related quality of life on market authorisation and pricing | Arnould B, Symonds T, Trueman P, Pavlovic M, Abetz L | Issue panel presented at ISPOR, November 2011 | Evidence synthesis/utility generation | ||
| 2011.11 | Value Based Health Care Working Group | Naci H | Workshop presented at ISPOR, November 2011 | Evidence synthesis/utility generation | ||
| 2011.11 | How do postmenopausal women describe breast pain and breakthrough bleeding associated with hormonal treatments for menopausal symptoms: Qualitative interviews with postmenopausal women in the USA, China, Mexico and Italy | Abraham L, Arbuckle R, Dennerstein L, Humphrey L, Maguire L, Mirkin S, Simon JA, Symonds T, Walmsley S | Poster presented at ISPOR, November 2011. Value in Health, 2011;14(7):PA404 | View Publication | Women's health | Qualitative patient-centered research and evaluation of COAs |
| 2011.11 | Impact of Dry Eye on Everyday Life (IDEEL) - symptom bother: estimating cut-off scores for dry eye severity groups | Acaster S, Verboven Y, Begley C, Chalmers R, Abetz L, Thompson T | Poster presented at ISPOR, November 2011. Value in Health, 2011;14:A507 | View Publication | Ophthalmology | Psychometric evaluation and statistical analysis of COAs |
| 2011.11 | How patients with chronic stable angina perceive and live with their disease on an everyday basis? | Benmedjahed K, Arnould B, Guillemin I, Alegre P | Poster presented at ISPOR, November 2011. Value in Health, 2011;14(7):PA386 | View Publication | Cardiovascular | Qualitative patient-centered research and evaluation of COAs |
| 2011.11 | Testing of a conceptual model of asthma in adolescents | Bright N, Maguire L, Arbuckle R, Tabberer M, Dale P | Poster presented at ISPOR, November 2011. Value in Health, 2011;14(7):A497 | View Publication | Respiratory diseases | Qualitative patient-centered research and evaluation of COAs |
| 2011.11 | Burden of herpes zoster and post-herpetic neuralgia: findings from a cross-sectional patient reported outcomes study | Carroll S, Gater A, Abetz L, Demuth D, Smith F, Mannan A | Poster presented at ISPOR, November 2011. Value in Health, 2011;14(7):PA405-A406 | View Publication | Infectious diseases, CNS/Neurology | Psychometric evaluation and statistical analysis of COAs |
| 2011.11 | An evaluation of statistical methods used to analyse patient-reported outcomes (PRO) data in published metastatic cancer studies | Gilet H, Brédart A, Regnault A, Bhandary D, Parasuraman B | Poster presented at ISPOR, November 2011. Value in Health, 2011;14(7):PA471 | View Publication | Oncology | Literature and COA instrument reviews |
| 2011.11 | Quality of life in small cell lung cancer: results of an open-label phase III clinical trial | Hudgens S, King J, Khan ZM | Poster presented at ISPOR, November 2011. Value in Health, 2011;14(7):PA460 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2011.11 | Validation of a patient-reported outcome (PRO) measure and a clinician-reported outcome (CRO) measure to assess satisfaction and preference with pharmacological stress agents for single photon emission computed tomography (SPECT) myocardial perfusion imaging (MPI) | Hudgens S, Kothari S | Poster presented at ISPOR, November 2011. Value in Health, 2011;14(7):PA255 | View Publication | Cardiovascular | Psychometric evaluation and statistical analysis of COAs |
| 2011.11 | Evaluation of the measurement properties of the antihypertensive adherence survey | Hudgens S, Lynch J, Pasquale K, Zacker C | Poster presented at ISPOR, November 2011. Value in Health, 2011;14(7):PA382-A383 | View Publication | Cardiovascular | Psychometric evaluation and statistical analysis of COAs |
| 2011.11 | Hemophilia A: patient impact and economic burden of the disease | Strandberg-Larsen M, Gater A, Thomson A | Poster presented at ISPOR, November 2011. Value in Health, 2011;14:A64 | View Publication | Hematology | Literature and COA instrument reviews |
| 2011.1 | Burden of herpes zoster and post-herpetic neuralgia: findings from a cross-sectional patient-reported outcomes study | Carroll S, Gater A, Abetz L, Demuth D, Smith F, Mannan A | Poster presented at British Geriatrics Society Autumn Meeting, October 2011 | Infectious diseases, CNS/Neurology | Psychometric evaluation and statistical analysis of COAs | |
| 2011.07 | Paediatrics: an unexplored and rewarding population – the right methods make it easier | Abetz L | Pharmaphorum, July 2011 | Pediatric care | Literature and COA instrument reviews | |
| 2011.06 | The value of medicine: opportunities, not threats | Charlesworth B | Pharmaphorum, June 2011 | Evidence synthesis/utility generation | ||
| 2011.06 | Burden of herpes zoster and post-herpetic neuralgia: interim findings from a cross-sectional, patient-reported outcomes study | Carroll S, Gater A, Abetz L, Demuth D, Smith F, Mannan A | Poster presented at British Pain Society Annual Scientific Meeting, June 2011 | Infectious diseases, CNS/Neurology | Psychometric evaluation and statistical analysis of COAs | |
| 2011.06 | Results using the modified Myelofibrosis Symptom Assessment Form (MFSAF v2.0) in COMFORT I: a randomized, double-blind phase III trial of JAK1/2 inhibitor ruxolitinib vs. placebo for patients with myelofibrosis (MF) | Mesa RA, Kantarjian H, Shields AL, Gotlib JR, Gupta V et al. on behalf of all COMFORT-1 investigators | Poster presented at the 16th Congress of the European Hematology Association. London, England, 9-12 June 2011 | Hematology, Oncology | Psychometric evaluation and statistical analysis of COAs | |
| 2011.05 | ‘Market access’ or just a new way of thinking about value? | Charlesworth B | Pharmaphorum, May 2011 | Access/HEOR consultancy | ||
| 2011.05 | Use of pain instruments as endpoints in regulatory submissions: implications of the US FDA’s new Patient Reported Outcomes (PRO) Guidance | Black PM, Shields, AL, Halling K | Poster presented at the 30th Annual Scientific Meeting of the American Pain Society. Austin, TX, USA, May 19 - 21, 2011 The Journal of Pain, 2011;12(4): 6. | View Publication | CNS/Neurology | Literature and COA instrument reviews, COA instrument development or modification |
| 2011 | Overview of primary endpoints, Progression-Free Survival (PFS) and Overall Survival (OS) for Non-Small Cell Lung Cancer (NSCLC): their value in treatment decisions and patient care | Heron L, De Castro Carpeño J, Chouaid C, Vergnenègre A, Bischoff H G, Walzer S | Poster presented at ISPOR, May 2011. Value in Health vol. 14,3,PA177-A178 | View Publication | Oncology | Literature/landscape reviews, Evidence synthesis/utility generation |
| 2011 | Economic burden of neural tube defects and impact of prevention with folic acid: A literature review | Yi Y, Lindemann M, Colligs A, Snowball C | Eur J Pediatr 2011; 170:1391–1400 | View Publication | Women's health | Literature/landscape reviews |
| 2011 | Is menopause experience universal? Lessons learned from a global outlook | Ayers B, Forshaw M, Hunter MS | Psychologist, 2011;24:348 | Women's health | Literature and COA instrument reviews | |
| 2011 | Self-stigma, empowerment and perceived discrimination among people with bipolar disorder or depression in 13 European countries: the GAMIAN-Europe study | Brohan E, Gauci D, Sartorius N, Thornicroft G; GAMIAN-Europe Study Group | Journal of Affective Disorders, 2011;129(1-3):56-63 | View Publication | CNS/Neurology | Psychometric evaluation and statistical analysis of COAs |
| 2011 | Disability hate crime and targeted violence and hostility: a mental health and discrimination perspective | Clement S, Brohan E, Sayce L, Pool J, Thornicroft G | Journal of Mental Health, 2011;20(3):219-225 | View Publication | CNS/Neurology | Literature and COA instrument reviews |
| 2011 | Evidence-based guidelines for determination of sample size and interpretation of the European Organisation for the Research and Treatment of Cancer Quality of Life Questionnaire Core 30 | Cocks K, King MT, Velikova G, Martyn St-James M, Fayers PM, Brown JM | Journal of Clinical Oncology, 2011;29(1):89-96 | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2011 | Haemophilia B: impact on patients and economic burden of disease | Gater A, Thomson TA, Strandberg-Larsen M | Thrombosis and Haemostasis, 2011;106(3):398-404 | View Publication | Hematology | Literature and COA instrument reviews |
| 2011 | The Hot Flush Behavior Scale: a measure of behavioral reactions to menopausal hot flushes and night sweats | Hunter MS, Ayers B, Smith M | Menopause, 2011;18(11):1178-1183 | View Publication | Women's health | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs, Literature and COA instrument reviews |
| 2011 | Oncology patient-reported claims: maximising the chance for success | Kitchen H, Rofail D, Caron M | Ecancermedicalscience, 2011;5:212, doi: 10.3332/ecancer.2011.212 | View Publication | Oncology | Literature and COA instrument reviews |
| 2011 | Employers' attitudes to people with mental health problems in the workplace in Britain: changes between 2006 and 2009 | Little K, Henderson C, Brohan E, Thornicroft G | Epidemiology and Psychiatric Sciences, 2011;20(1):73-81 | View Publication | CNS/Neurology | Psychometric evaluation and statistical analysis of COAs |
| 2011 | Reported stigma and discrimination by people with a diagnosis of schizophrenia | Rose D, Willis R, Brohan E, Sartorius N, Villares C, Wahlbeck K, Thornicroft G; INDIGO Study Group | Epidemiology and Psychiatric Sciences, 2011;20(2):193-204 | View Publication | CNS/Neurology | Qualitative patient-centered research and evaluation of COAs |
| 2011 | IBS-C patient symptom reports: analysis of exploratory open-ended questions | Carson R T, Lewis B E, Shiff S J, Johnston J M, Dennee-Sommers B, Lasch K, Hwang S, Marquis P | Value in Health, 2011;14: A183. | View Publication | Gastroenterology | Qualitative patient-centered research and evaluation of COAs |
| 2011 | Evaluation of the measurement properties of the antihypertensive adherence survey | Hudgens S | Value in Health, 2011;14: A382. | View Publication | Cardiovascular | Psychometric evaluation and statistical analysis of COAs |
| 2011 | Quality of life in small cell lung cancer: Results of an open-label phase III clinical trial | Hudgens S | Value in Health, 2011;14: A460. | View Publication | Oncology | Psychometric evaluation and statistical analysis of COAs |
| 2011 | Treatment satisfaction instruments for different purposes during a product’s lifecycle: Keeping the end in mind | Rofail D, Regnault A, Taylor F, Filonenko A | Patient, 2011;4(4): 227-240. | View Publication | Literature and COA instrument reviews | |
| 2011 | Oncology patient-reported claims: maximising the chance for success | Rofail D, Abetz L, Caron M, Emery MP, Kitchen H | Ecancermedicalscience, 2011;5:212, doi: 10.3332/ecancer.2011.212 | View Publication | Oncology | Literature and COA instrument reviews |
| 2011 | Development and validation of the Impact of Dry Eye on Everyday Life (IDEEL) questionnaire, a Patient-Reported Outcome (PRO) measure for the assessment of the burden of dry eye on patients | Abetz L, Rajagopalan K, Mertzanis P, Begley C, Barnes R, Chalmers R | Health and Quality of Life Outcomes, 2011;9:111, https://doi.org/10.1186/1477-7525-9-111 | View Publication | Ophthalmology | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs |
| 2011 | Goal attainment scaling in patients with lower urinary tract symptoms: development and pilot testing of the Self-Assessment Goal Achievement (SAGA) questionnaire | Brubaker L, Khullar V, Piault E, Evans CJ, Bavendam T, Beach J, Yeh Y, Kopp ZS, Kelleher CJ, Trocio J | International Urogynecological Journal, 2011;22(8):937-946 | View Publication | Urology/Urogenital | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2011 | Assessing fibromyalgia-related fatigue: content validity and psychometric performance of the Fatigue Visual Analog Scale in adult patients with fibromyalgia | Crawford B, Piault EC, Lai C, Bennett RM | Clinical and Expimental Rheumatology, 2011;29:S34-43 | View Publication | CNS/Neurology | COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs |
| 2011 | Development of a questionnaire to assess experience and preference of intranasal corticosteroids in patients with allergic rhinitis | Crawford B, Stanford R, Wong A, Dalal A, Bayliss M | Patient Related Outcome Measures, 2011;119-126 | View Publication | Allergies | Patient preference research, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2011 | Psychometric validation of the experience with allergic rhinitis nasal spray questionnaire | Crawford B, Stanford R, Wong A, Dalal A, Bayliss M | Patient Related Outcome Measures, 2011;2:127-133 | View Publication | Allergies | Psychometric evaluation and statistical analysis of COAs |
| 2011 | Pain in castration-resistant prostate cancer with bone metastases: a qualitative study | Gater A, Abetz-Webb L, Battersby C, Parasuraman B, McIntosh S, Nathan F, Piault EC | Health and Quality of Life Outcomes, 2011;9:88, doi: 10.1186/1477-7525-9-88 | View Publication | Oncology, Men's health | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2011 | Pediatric restless legs syndrome: analysis of symptom descriptions and drawings | Picchietti D L, Arbuckle RA, Abetz L, Durmer J S, Ivanenko A, Owens J A, Croenlein J, Allen R P, Walters AS | Journal of Child Neurology, 2011;26(11):1365-76 | View Publication | CNS/Neurology, Pediatric care | Qualitative patient-centered research and evaluation of COAs |
| 2011 | Validation of a Patient-Reported Outcome (PRO) measure and a Clinician-Reported Outcome (CRO) measure to assess satisfaction and preference with pharmacological stress agents for Single Photon Emission Computed Tomography (SPECT) Myocardial Perfusion Imaging (MPI) | Hudgens S, Kothari S | Value in Health, 2011;14: A255. | View Publication | Cardiovascular | Psychometric evaluation and statistical analysis of COAs |
| 2011 | Translatability assessment of the post-migraine questionnaire | Lambe J, Acquadro C, Conway K, Ng-Mak D, Healy C, Norquist J, Fitzgerald K, Banderas B, Evans C, Kornstein A | Value in Health, 2011;14: A214. | View Publication | CNS/Neurology | COA instrument development or modification |
| 2011 | The role of health-related quality of life data in the drug approval processes in the United States and Europe: a review of guidance documents and authorizations of medicinal products from 2006 to 2010 | Marquis P, Caron M, Emery M P, Scott J, Arnould B, Acquadro C | Pharm Med, 2011;25: 147. | View Publication | Literature and COA instrument reviews | |
| 2011 | Key concepts of migraine postdrome: a qualitative study to develop a post-migraine questionnaire | Ng-Mak DS, Fitzgerald KA, Norquist JM, Banderas BF, Nelsen LM, Evans CJ, Healy CG, Ho TW, Bigal M | Headache, 2011;51: 105. | View Publication | CNS/Neurology | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2010.11 | Mixed treatment comparison of bevacizumab-based therapies relative to doublet-chemotherapy combinations to estimate the relative efficacy in progression-free survival for treatment of first-line advanced or metastatic non-small cell lung cancer (NSCLC) | Yi Y, Chouaid C, Vergnenegre A, Bischoff HG, Bergman G, Walzer S, Philips Z | Poster presented at ISPOR, November 2010. Value in Health vol. 13,7,A253-A254 | View Publication | Oncology | Evidence synthesis/utility generation |
| 2010.11 | The cost-effectiveness of Abatacept in combination with methotrexate for the treatment of patient with active RA after an inadequate response to methotrexate in the UK | Guyot P, Taylor P, Christensen R, Pericleous L, Lebmeier M, Drost P, Bergman G | Poster presented at ISPOR, November 2010 | Musculoskeletal diseases, Immunology | Economic models | |
| 2010.11 | Use of qualitative research to identify determinants of persistence for osteoporotic treatments | Alègre-Bouremad P, Arnould B, Spizak C, Marrel A | Poster presented at ISPOR November 2010. Value in Health, 2010;13(7):A382 | View Publication | Musculoskeletal diseases | Qualitative patient-centered research and evaluation of COAs |
| 2010.11 | Child and parent reports of symptoms of irritable bowel syndrome with constipation (IBS-C): results of qualitative interviews | Arbuckle R, Lewis BE, Carson R, Abetz L, Johnston JM | Poster presented at ISPOR November 2010. Value in Health, 2010;13(7):A373 | View Publication | Gastroenterology, Pediatric care | Qualitative patient-centered research and evaluation of COAs |
| 2010.11 | Herpes zoster and post-herpetic neuralgia: considerations for a prospective, cross-sectional, patient reported outcomes study | Carroll S, Gater A, Abetz L, Demuth D, Smith F, Mannan A | Poster presented at ISPOR, November 2010. Value in Health, 2010;13(7):A441-A442 | View Publication | Infectious diseases, CNS/Neurology | Literature and COA instrument reviews |
| 2010.11 | Development of an instrument mirroring patient and physician perception of psoriasis severity and treatment effect | De Climens R, Marant C, Arnould B, Thibout E | Poster presented at ISPOR November 2010 | View Publication | Dermatology, Immunology | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2010.11 | Indirect treatment comparison to compare efficacy in Health Assessment questionnaire (HAQ) score for biologic agents with methotrexate in patients with RA and active disease despite methotrexate therapy | Guyot P, Taylor P, Christensen R, Pericleous L, Lebmeier M, Drost P, Bergman G | Poster presented at ISPOR, November 2010 | Musculoskeletal diseases, Immunology | Literature and COA instrument reviews | |
| 2010.11 | Impact of MMRV mass vaccination with or without a catch up program on the incidence of varicella complications in France | Ouwens M, Littlewood K, Sauboin C, Tehard B, Alain S, Denis F, Boelle PY | Poster presented at ISPOR, November 2010. Value in Health, 2010;13(7):A430 | View Publication | Infectious diseases, Vaccines | |
| 2010.11 | Confirmation of brief pain inventory short form (BPI-SF) 'worst pain' item cut-point for the assessment of pain progression in castration-resistant prostate cancer (CRPC) | Regnault A, Gater A, Battersby C, Meunier J, Abetz L | Poster presented at ISPOR, November 2010. Value in Health, 2010;13(7):A274 | View Publication | Oncology, Men's health | Psychometric evaluation and statistical analysis of COAs |
| 2010.11 | Treatment satisfaction instruments for different purposes during a product’s lifecycle: Keeping the end in mind | Rofail D, Regnault A, Taylor F, Filonenko A | Poster presented at ISPOR, November 2010 | Literature and COA instrument reviews | ||
| 2010.11 | Vision-Related Quality of life instruments (QoL) after refractive cataract surgery | Tugaut B, Meunier J, Viala-Danten M, Arnould B, Berdeaux G | Poster presented at ISPOR, November 2010. Value in Health, 2010;13(7):A403 | View Publication | Ophthalmology | Literature and COA instrument reviews |
| 2010.11 | The missing piece between treatment experience and intention to persist: testing the internal consistency reliability and predictive validity of acceptability | Viala-Danten M | Poster presented at ISPOR, November 2010. Value in Health, 2010;13(7):A361 | View Publication | Psychometric evaluation and statistical analysis of COAs | |
| 2010.1 | An introduction to pediatric patient-reported outcomes and pediatric clinical trial design | Arbuckle R, Abetz-Webb L, Carson R, Edelman Lewis B, Chassany O | Workshop presented at ISOQOL, October 2010 | View Publication | Pediatric care | Literature and COA instrument reviews, COA instrument development or modification |
| 2010.1 | Symptoms of pediatric chronic constipation: results of qualitative interviews with children and their primary caregivers | Carson RT, Abetz LN, Arbuckle R A, Lewis B, Bonner N, Shiff S, Johnston J | Poster presented at North American Society for Pediatric Gastroenterology, Hepatology and Nutrition Annual Meeting, October 2010 | Gastroenterology, Pediatric care | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification | |
| 2010.1 | Development of pediatric irritable bowel syndrome with constipation measures: results of qualitative interviews with children and their primary caregivers | Lewis B E, Arbuckle R, Abetz L, Carson R, Pompilus F, Johnston J, Shiff S | Poster presented at North American Society for Pediatric Gastroenterology, Hepatology and Nutrition Annual Meeting, October 2010 | Gastroenterology, Pediatric care | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification | |
| 2010.1 | Results of the patient-reported outcomes of fatigue in cancer consortium study: patients define cancer-related fatigue | Lasch K, Marquis P, Zeytoonjian A, Yaworsky A, Leonard C, Patient-Reported Outcomes in Fatigue (PROOF) consortium | Poster session presented at 2nd International Cancer Fatigue Symposium, Montreal, Canada, 3–4 October 2010 | View Publication | Oncology | Qualitative patient-centered research and evaluation of COAs |
| 2010.09 | Cognitive impairment associated with schizophrenia: The humanistic and economic burden | Rofail D, Kitchen H, Heyes A, Heron L, Sacco P | Poster presented at the American Neurological Association, September 2010 | CNS/Neurology | Treatment pathways/burden of illness | |
| 2010.09 | Health care data in Asia: collecting, sharing and using in Thailand, China Mainland, South Korea, Taiwan, Japan, and Malaysia | Bae S, Pwu RF, Xu L, Srithamrongsawat S, Ikdea S, Aljunid S, Bhattacharjya A, Crawford B, Sung J | Plenary session at ISPOR, September 2010 | Literature and COA instrument reviews | ||
| 2010.09 | The Impact of Dry Eye on Everyday Life (IDEEL) Questionnaire: Saturation, reliability, validity and discriminative ability compared to generic measures | Abetz L, Chalmers R, Begley C, Mertzanis P, Venkataraman K, Barnes R | Poster presented at International Conference on the Tear Film & Ocular Surface (TFOS): Basic Science and Clinical Relevance, September 2010 | View Publication | Ophthalmology | COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs |
| 2010.09 | Using population-based data in outcomes research studies: strengths, weaknesses and lessons learned | Chen W, Tang CH, Crawford B, Sung J | Workshop presented at ISPOR, September 2010 | Literature and COA instrument reviews | ||
| 2010.09 | Conducting outcomes research in Asia: challenges of local adaptation of global OR studies | Crawford B, Wang L, Leartsakulpanitch J | Workshop presented at ISPOR, September 2010 | Literature and COA instrument reviews | ||
| 2010.07 | Caregiver burden in Alzheimer's disease | Ito D, Stokes J, Piault-Louis E, Bonnet P | Poster session presented at Alzheimer’s Association International Conference on Alzheimer’s Disease , Honolulu, USA, 10-15 July 2010 | View Publication | CNS/Neurology | Qualitative patient-centered research and evaluation of COAs |
| 2010.06 | Pediatric restless legs syndrome: qualitative analysis of symptom descriptions and drawings | Picchietti DL, Arbuckle R, Abetz LA, Durmer JS, Ivanenko A, Owens JA, Croenlein J, Allen RP, Walters AS | Poster presented at Sleep Conference, June 2010 | CNS/Neurology | Qualitative patient-centered research and evaluation of COAs | |
| 2010.04 | Development of a caregiver burden assessment in Alzheimer's disease | Ito D, Stokes J, Piault E | Poster session presented at 62nd Annual Meeting of the American Academy of Neurology, 10–17 April 2010 | View Publication | CNS/Neurology | COA instrument development or modification |
| 2010 | Cost-utility analysis of rufinamide versus topiramate and lamotrigine for the treatment of children with Lennox-Gastaut Syndrome in the United Kingdom | Verdian L, Yi Y | Seizure 2010; 19(1):1-11 | View Publication | CNS/Neurology, Pediatric care, Rare diseases | Evidence synthesis/utility generation |
| 2010 | Economic models in type 2 diabetes | Yi Y, Philips Z, Bergman G, Burslem K | Current Medical Research & Opinion 2010; 26 (9): 2105–2118 | View Publication | Endocrinology/Metabolic diseases | Literature/landscape reviews, Economic models |
| 2010 | An interpretative phenomenological analysis of the psychological ramifications of hand-arm vibration syndrome | Ayers B, Forshaw M | Journal of Health Psychology, 2010;15(4):533-542 | View Publication | CNS/Neurology | Qualitative patient-centered research and evaluation of COAs |
| 2010 | Understanding of stroke and coronary heart disease in the UK: an exploratory study | Ayers BN, Myers LB | Psychology, Health and Medicine, 2010;15(4):474-477 | View Publication | Cardiovascular | Psychometric evaluation and statistical analysis of COAs |
| 2010 | Measuring mental illness stigma | Brohan E, Slade M, Clement S, Thornicroft G | Mental Health Outcome Measures (3rd edition), Royal College of Psychiatry, Oxford 2010 | CNS/Neurology | Literature and COA instrument reviews | |
| 2010 | Stigma and discrimination of mental health problems: workplace implications | Brohan E, Thornicroft G | Occupational Medicine (London), 2010;60(6):414-415 | View Publication | CNS/Neurology | Psychometric evaluation and statistical analysis of COAs |
| 2010 | Assessing sleep in fibromyalgia: investigation of an alternative scoring method for the Jenkins sleep scale based on data from randomized controlled studies | Crawford B, Piault E, Lai C, Sarzi-Puttini P | Clinical and Experimental Rheumatology, 2010;28(6 Supp 63):S100S109 | View Publication | CNS/Neurology | Psychometric evaluation and statistical analysis of COAs |
| 2010 | PRO development: rigorous qualitative research as the crucial foundation | Lasch KE, Marquis P, Vigneux M, Abetz L, Arnould B, Bayliss M, Crawford B, Rosa K | In Bhugra D & Morgan C (Eds.) Principles of Social Psychiatry (2nd edition) Wiley-Blackwell 2010;331 | View Publication | Literature and COA instrument reviews | |
| 2010 | Mental illness and the workplace: conceal or reveal? | Wheat K, Brohan E, Henderson C, Thornicroft G | Journal of the Royal Society of Medicine, 2010;103(3):83-86 | View Publication | CNS/Neurology | Literature and COA instrument reviews |
| 2010 | Drivers of treatment decision following first-line therapy in advanced non-small cell lung cancer | Lasch K, Stokes J, Liepa A, Meldahl M, Arnett L, Basch E | Support Care Cancer, 2010;18: S88. | Oncology | Literature and COA instrument reviews | |
| 2010 | Responsiveness of the cough and sputum assessment questionnaire in exacerbations of COPD and chronic bronchitis | Monz BU, Sachs P, McDonald J, Crawford B, Nivens MC, Tetzlaff K | Respir Med, 2010;104: 534-542. | View Publication | Respiratory diseases | Psychometric evaluation and statistical analysis of COAs |
| 2010 | An instrument assessing satisfaction with iron chelation therapy: Psychometric testing from an open-label clinical trial | Rofail D, Viala M, Gater A, Abetz-Webb L, Baladi JF, Cappellini MD | Advances in Therapy, 2010;27(8):533-546 | View Publication | Hematology | Psychometric evaluation and statistical analysis of COAs |
| 2010 | Development of a pediatric chronic constipation symptom measure: results of qualitative interviews with children and their parents | Abetz L, Arbuckle R, Carson R, Lewis B, Hunter L J, Shiff S J, Johnston J | Quality of Life Research, 2010;19:141-142 | View Publication | Gastroenterology, Pediatric care | Qualitative patient-centered research and evaluation of COAs |
| 2010 | Development of the Pediatric Restless Legs Syndrome Severity Scale (P-RLS-SS): A patient-reported outcome measure of pediatric RLS symptoms and impact | Arbuckle R, Abetz L, Durmer J, Ivaneko A, Owens J, Croenlein J, Bolton K, Moore A, Allen RP, Walters A, Picchietti D | Sleep Medicine, 2010;11(9):897-906 | View Publication | CNS/Neurology, Pediatric care | COA instrument development or modification |
| 2010 | Child and parent reports of symptoms of Irritable Bowel Syndrome with Constipation (IBS-C): results of qualitative interviews | Arbuckle R, Lewis BE, Carson R, Abetz L, Johnston J M | Value in Health, 2010;13:A373 | View Publication | Gastroenterology, Pediatric care | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification |
| 2010 | Self-stigma, empowerment and perceived discrimination among people with schizophrenia in 14 European countries: the GAMIAN-Europe study | Brohan E, Elgie R, Sartorius N, Thornicroft G, GAMIAN-Europe Study Group | Schizophrenia Research, 2010;122(1-3):232-238 | View Publication | CNS/Neurology | Psychometric evaluation and statistical analysis of COAs |
| 2010 | Employees with mental health problems: Survey of U.K. employers' knowledge, attitudes and workplace practices | Brohan E, Henderson C, Little K, Thornicroft G | Epidemiologia e Psichiatria Sociale, 2010;19(4):326-332 | View Publication | CNS/Neurology | Psychometric evaluation and statistical analysis of COAs |
| 2010 | Experiences of mental illness stigma, prejudice and discrimination: a review of measures | Brohan E, Slade M, Clement S, Thornicroft G | BMC Health Services Research, 2010;10:80, doi: 10.1186/1472-6963-10-80 | View Publication | CNS/Neurology | Literature and COA instrument reviews |
| 2010 | The symptoms of Irritable Bowel Syndrome with Constipation (IBS-C): results of qualitative interviews with children and their parents | Carson R, Arbuckle R, Abetz L, Lewis BE, Hunter L J, Johnston J, Shiff S J | Quality of Life Research, 2010;19:6-7 | Gastroenterology, Pediatric care | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification | |
| 2010 | The development of the ascites impact measure questionnaire to assess patient symptoms that trigger a paracentesis | Crawford B, Piault E, Corson H, Gotlieb W | Quality of Life Research, 2010;19:116 | Oncology | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification | |
| 2010 | Quantifying the patient-reported burden of herpes zoster and post-herpetic neuralgia in the UK: practical considerations | Gater A, Carroll S, Abetz L, Demuth D, Smith F, Mannan A | Quality of Life Research, 2010;19:123 | View Publication | Infectious diseases, CNS/Neurology | Literature and COA instrument reviews |
| 2010 | Fatigue in fibromyalgia: a conceptual model informed by patient interviews | Humphrey L, Arbuckle R, Mease P, Williams D, Samsoe B D, Gilbert C | BMC Musculoskeletal Disorders, 2010;11:216, doi: 10.1186/1471-2474-11-216 | View Publication | CNS/Neurology | Qualitative patient-centered research and evaluation of COAs |
| 2010 | Content Validity of Utility Assessment in Type II Diabetes and Alzheimer's disease | McGrath C, Rofail D, Abetz L | Quality of Life Research, 2010;19:29 | CNS/Neurology, Endocrinology/Metabolic diseases | Literature and COA instrument reviews | |
| 2010 | Using qualitative methods to inform the trade-off between content validity and consistency in utility assessment: the example of type 2 diabetes and Alzheimer's disease | McGrath C, Rofail D, Gargon E, Abetz L | Health and Quality of Life Outcomes, 2010;8:23, doi: 10.1186/1477-7525-8-23 | View Publication | CNS/Neurology, Endocrinology/Metabolic diseases | Literature and COA instrument reviews |
| 2010 | Psychometric validation of the ascites impact measure questionnaire to assess patient symptoms that trigger a paracentesis | Piault E, Yeh Y, Crawford B, Joulain F, Gotlieb W | Quality of Life Research, 2010;19:116 | Oncology | Psychometric evaluation and statistical analysis of COAs | |
| 2010 | Content and psychometric validity of the Eyelash Satisfaction Questionnaire (ESQ) in China | Crawford B, Tanaka E, Zhu Y, Burgess S M | Value Health, 2010;13: A542. | View Publication | Dermatology | COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs |
| 2010 | Evaluation of the willingness-to-pay for anticancer treatment among Korean patients with metastatic breast cancer: A multicenter, cross-sectional study | Lee S, Oh D, Kim S, Chung HC, Ko SK, Crawford B, McDonald J, Ro J | J Clin Oncol, 2010;28: e11517. | View Publication | Oncology | Evidence synthesis/utility generation |
| 2009.2 | Symptoms and impact of premenstrual dysphoric disorder (PMDD): concepts and measurement | Rofail D, Abetz L, Lindermann M, Filonenko A, Colligs A, Endicott J | Value in Health, 2009;12:A295 | View Publication | Women's health | Literature and COA instrument reviews |
| 2009.12 | Improved Patient Satisfaction, Adherence and Health-related Quality of Life with Deferasirox (Exjade®) in β-thalassemia Patients Previously Receiving Other Iron Chelation Therapies | Porter JB, Athanasiou-Metaxa M, Bowden DK, Troncy J, Habr D, Domokos G, Roubert B, Rofail D, Gater A, Baladi JF, Cappellini MD | Poster presented at Annual Meeting of the American Society for Hematology, December 2009 Blood, 2009;114(22):2486 | View Publication | Hematology | Psychometric evaluation and statistical analysis of COAs |
| 2009.11 | Evaluation of the willingness-to-pay for anti-cancer treatment amongst Korean metastatic breast cancer patients: A multicenter, cross-sectional study | Oh DY, Kim SB, Chung HC, Lee SY, Ko SK, Crawford B, McDonald J, Ro J | Poster session presented at: Korean Association for Clinical Oncology, Seoul, Korea, 21 November 2009 | Oncology | Evidence synthesis/utility generation | |
| 2009.05 | Advanced patient-reported outcomes assessment: psychometric methods | Crawford B, Rosa K, McDonald J | Short course presented at ISPOR, May 2009 | Psychometric evaluation and statistical analysis of COAs, Literature and COA instrument reviews | ||
| 2009.05 | Responsiveness of the Cough And Sputum Assessment Questionnaire (CASA-Q) in patients with COPD and chronic bronchitis recovering from acute exacerbations | Tetzlaff K, Sachs P, McDonald J, Crawford B, Nivens C, Monz B | Poster session presented at American Thoracic Society, San Diego, California, 15–20 May 2009 American Journal of Respiratory and Critical Care Medicine, 2009;179: A4313. | View Publication | Respiratory diseases | Psychometric evaluation and statistical analysis of COAs |
| 2009 | Helpseeking and stigma - A broader view | Clement S, Brohan E, Thornicroft G | The Psychologist, 2009;22:192 | CNS/Neurology | Literature and COA instrument reviews | |
| 2009 | Cost-effectiveness of valsartan in Japan: results from the Jikei heart study | Shimizu M, Crawford B, Ikewaki K, Taniguchi I, Kamae I, Dahlof B, Drost P, Mochizuki S | Value in Health, 2009;12:A151 | View Publication | Cardiovascular | Psychometric evaluation and statistical analysis of COAs |
| 2009 | Use of "spydergrams" to present and interpret SF-36 health-related quality of life data across rheumatic diseases | Strand V, Crawford B, Singh J, Choy E, Smolen JS, Khanna D | Ann Rheum Dis, 2009;68:1800 | View Publication | Musculoskeletal diseases | Psychometric evaluation and statistical analysis of COAs |
| 2009 | Public attitudes and the problem of stigma | Thornicroft G, Brohan E, Kassam A | New Oxford Textbook of Psychiatry (2nd edition), Oxford University Press, Oxford 2009 | CNS/Neurology | Literature and COA instrument reviews | |
| 2009 | Global pattern of experienced and anticipated discrimination against people with schizophrenia: a cross-sectional survey | Thornicroft G, Brohan E, Rose D, Sartorius N, Leese M; INDIGO Study Group | Lancet, 2009;31;373:408-415 | View Publication | CNS/Neurology | Qualitative patient-centered research and evaluation of COAs |
| 2009 | Alzheimer's disease treatment: assessing caregiver preferences for mode of treatment delivery | Abetz L, Rofail D, Mertzanis P, Heelis R, Rosa K, Tellefsen C, Roborel de Climens A, McBurney C, Thomas S | Advances in Therapy, 2009;26(6):627-644 | View Publication | CNS/Neurology | Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs |
| 2009 | How do patients describe their symptoms of Interstitial Cystitis/Painful Bladder Syndrome (IC/PBS)? Qualitative interviews with patients to support the development of a patient-reported symptom-based screener for IC/PBS | Abraham L, Arbuckle R, Bonner N, Crook T, Humphrey L, Mills I W, Moldwin R M, Nording J, Scholfield D, Symonds T, van de Merwe J P | Value in Health, 2009;12:A310 | View Publication | Urology/Urogenital | Qualitative patient-centered research and evaluation of COAs |
| 2009 | Item reduction and psychometric validation of the Oily Skin Self-Assessment Scale (OSSAS) and the Oily Skin Impact Scale (OSIS) | Arbuckle R, Clark M, Harness J, Bonner N, Scott J, Draelos Z, Rizer R, Yeh Y, Copley-Merriman K | Value in Health, 2009;12(5):828-837 | View Publication | Dermatology | Psychometric evaluation and statistical analysis of COAs |
| 2009 | The psychometric validation of the Sheehan Disability Scale (SDS) in patients with bipolar disorder | Arbuckle R, Frye MA, Brecher M, Paulsson B, Rajagopalan K, Palmer S, Degl' Innocenti A | Psychiatry Research, 2009;165(1-2):163-174 | View Publication | CNS/Neurology | Psychometric evaluation and statistical analysis of COAs |
| 2009 | Psychometric Evaluation of the Diabetes Symptom Checklist-Revised (DSC-R)-A Measure of Symptom Distress | Arbuckle R, Humphrey L, Vardeva K, Arondekar B, Danten-Viala M, Scott JA, Snoek FJ | Value in Health, 2009;12(8):1168-1175 | View Publication | Endocrinology/Metabolic diseases | Psychometric evaluation and statistical analysis of COAs |
| 2009 | Psychometric validation of the Oily Skin Self-Assessment Scale (OSSAS) and the Oily Skin Impact Scale (OSIS) | Mamolo C, Harness J, Bonner N, Arbuckle R | Journal of the American Academy of Dermatology, 2009;60(3):AB16 | View Publication | Dermatology | Psychometric evaluation and statistical analysis of COAs |
| 2009 | Fibromyalgia fatigue – the development of a conceptual model based on qualitative patient interviews | Mease P, Humphrey L, Arbuckle R, Williams D A, Danneskiold-Samsøe B, Gilbert C | Annals of Rheumatic Diseases, 2009;68:759 | CNS/Neurology | Qualitative patient-centered research and evaluation of COAs | |
| 2009 | Fibromyalgia fatigue – development of a conceptual model based on qualitative patient interviews | Mease P, Humphrey L, Arbuckle R, Williams DA, Danneskiold-Samsoe B, Gilbert C | Value in Health, 2009;12(7):A232 | View Publication | CNS/Neurology | Qualitative patient-centered research and evaluation of COAs |
| 2009 | Satisfaction and adherence in patients with iron overload receiving iron chelation therapy as assessed by a newly developed patient instrument | Rofail D, Abetz L, Viala M, Gait C, Baladi J F, Payne K | Value in Health, 2009;12(1):109-117 | View Publication | Hematology | Psychometric evaluation and statistical analysis of COAs |
| 2009 | Strategy and guidelines for conducting and analyzing patient-reported outcomes in clinical trials | Crawford B, Rosa K, McDonald J | Short course presented at ISPOR, May 2009 | Psychometric evaluation and statistical analysis of COAs, Literature and COA instrument reviews | ||
| 2009 | Validation of the sleep impact scale in patients with major depressive disorder and insomnia | Lasch K, Joish VN, Zhu Y, Rosa K, Qiu C, Crawford B | Curr Med Res Opin, 2009;25: 1699. | View Publication | CNS/Neurology | Psychometric evaluation and statistical analysis of COAs |
| 2008.12 | Improved Health-Related Quality of Life in Patients with Hematological Disorders Receiving Deferasirox (Exjade®) | Porter J, Bowden D, Ganser A, Domokos G, Gater A, Baladi J-F, Cappellini MD | Presented at ASH, December 2008 Blood, 2008;112(11):1307 | View Publication | Hematology | Psychometric evaluation and statistical analysis of COAs |
| 2008.11 | Satisfaction with iron chelation therapy is associated with improved quality of life in patients with iron overload | Rofail D, Abetz A, Gater A, Baladi JF | Poster presented at ISPOR, November 2008. Value in Health, 2008;11(6):A646 | View Publication | Hematology | Psychometric evaluation and statistical analysis of COAs |
| 2008.11 | The significance of patient-reported outcomes to facilitate market access during a product’s lifecycle | Rofail D, Abetz A, Gater A, Brown C | Poster presented at ISPOR, November 2008 | View Publication | Literature and COA instrument reviews | |
| 2008.04 | Stigma and discrimination | Thornicroft, G, Metha, N, Brohan, E, Kassam A | Int J Ment Health Syst. 2008 Apr 13;2(1):3 | CNS/Neurology | Literature and COA instrument reviews | |
| 2008 | Eliciting utility scores for health states associated with Lennox-Gastaut Syndrome | Yi Y, Verdian L, Oyee J, Tolley K, Heyes A | Value in Health vol. 11,6, A606 (2008) | View Publication | CNS/Neurology, Rare diseases | Evidence synthesis/utility generation |
| 2008 | Rufinamide in the adjunctive treatment of Lennox-Gastaut Syndrome (LGS): A cost effectiveness analysis | Yi Y, Verdian L, Jansen JP | Value in Health vol.11,6, A605 (2008) | CNS/Neurology, Rare diseases | Economic models | |
| 2008 | Medical savings accounts in China | Yi Y, Maynard A | Euro Observer 2008; 10(4):12-14 | View Publication | Access/HEOR consultancy | |
| 2000 | Patient reported outcomes status update on meaningful score changes to establish endpoint definitions: Challenges, observations, and (some) solutions from the field | Shields AL | Invited presentation for the DIA’s 3rd annual meeting on Advancing the Science of Study Endpoints. Washington DC, USA | Qualitative patient-centered research and evaluation of COAs | ||
| 2000 | Managing joint health in haemophilia: perspectives from patients, caregivers, and healthcare professionals to create a patient-reported outcome tool for patients aged 8 years and older | Bladen M, Sivasubramaniyam S, Klooster B, Shields A, Khan N | Poster presented at World Federation of Hemophilia | Hematology, Pediatric care | Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification | |
| 2000 | Comparison of utility indices based on alternative approaches for mapping from EQ-5D-3L to EQ-5D-5L | Bennett B, Shaw JW, Trigg A, Cocks K, DeRosa M, Taylor F, Kiff C, Noon K, van Hout B | Poster presented at EuroQoL Academy Meeting | Psychometric evaluation and statistical analysis of COAs | ||
| 2000 | A cross-national comparison of utility indices derived from the EQ-5D-3L and a mapping of the EQ-5D-3L to the EQ-5D-5L | Bennett B, Shaw JW, Trigg A, Cocks K, DeRosa M, Taylor F, van Hout B | Poster presented at EuroQoL Academy Meeting | Psychometric evaluation and statistical analysis of COAs | ||
| 2000 | Quality of life in patients with microsatellite instability or mismatch repair deficient metastatic colorectal cancer treated with nivolumab alone or in combination with ipilimumab: CheckMate 142 | Van Cutsem E, Dixon M, Taylor F, Sun X, Yip C, Blum SI | Poster presented at ESMO Congress | Oncology | Psychometric evaluation and statistical analysis of COAs | |
| 2000 | Association of health-related quality of life and treatment safety with nivolumab in patients with resected stage IIIB–C or stage IV melanoma: analysis of CheckMate 238 4-year follow-up data | Weber JS, Gogas HJ, Sun X, Yip C, Taylor F, Braverman J, Lobo M, Thakkar PK, Moshyk A, Larkin J, Ascierto PA | Poster presented at ASCO Annual Meeting | Oncology | Psychometric evaluation and statistical analysis of COAs | |
| 2000 | Psychometric evaluation of the Hidradenitis Suppurativa Symptom Assessment (HSSA) and Hidradenitis Suppurativa Impact Assessment (HSIA) in patients with hidradenitis suppurativa | Kimball A, Banderas B, Taylor F, McDonald J, Skup M, Calimlim B | Presented at European Academy of Dermatology and Venereology | Dermatology, Immunology | Psychometric evaluation and statistical analysis of COAs |