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.

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Publication titleAuthorsJournal/conferenceRelated link
2024.01Disutility of Cognitive Processing Speed (CPS) impairment in the context of multiple sclerosis: A time trade-off (TTO) elicitation studyBenedict R, Vo P, Adlard N, Grennan O, Enstone A, Bridge D, Wyn R, Cohan SClinicoEconomics and Outcomes Research 2024:16CNS/NeurologyEvidence synthesis/utility generation
2024.01The cost of seasonal influenza: A systematic literature review on the humanistic and economic burden of influenza in older (≥ 65 years old) adultsLanger J, Welch V, Moran M, Cane A, Lopez S, Srivastava A, Enstone A, Sears A, Markus K, Heuser M, Kewley R, Whittle IAdv Ther (2024)View PublicationInfectious diseasesLiterature/landscape reviews, Treatment pathways/burden of illness
2024.01Definition and measurement of post-COVID-19 conditions in real-world practice: A global systematic literature reviewYang J, Markus K, Andersen K, Rudolph A, McGrath L, Nguyen J, Kyaw M, Whittle I, Blazos V, Heron L, Regazzini Spinardi JBMJ Open 2024;14:e077886View PublicationInfectious diseasesLiterature/landscape reviews
2023.12Global prevalence of varicella-associated complications: A systematic review and meta-analysisShah H, Meiwald A, Perera C, Casabona G, Richmond P, Jamet NInfect Dis Ther 13, 79–103 (2024)View PublicationInfectious diseasesLiterature/landscape reviews
2023.11Burden and economic impact of vaccine-preventable cancer mortality in EuropeBencina G, Oliver E, Meiwald A, Hughes R, Sabale U, Ovcinnikova O, Morais E, Ugrekhelidze D, Weston GPoster presented at ISPOR, November 2023View PublicationOncology, Vaccines, Infectious diseasesTreatment pathways/burden of illness, Economic models
2023.11The indirect costs and burden of vaccine preventable cancers mortality in Middle East and North Africa (MENA) countriesBencina G, Oliver E, Meiwald A, Hughes R, Weston G, Ugrekhelidze DPoster presented at ISPOR, November 2023View PublicationOncology, Vaccines, Infectious diseasesTreatment pathways/burden of illness, Economic models
2023.11Pieces: Productivity losses due to premature mortality from cancer in GreeceYfantopoulos N, Skroumpelos A, Karokis A, Hughes R, Weston G, Bencina GPoster presented at ISPOR, November 2023View PublicationOncologyTreatment pathways/burden of illness, Economic models
2023.11Cancer-related mortality in Türkiye: Years of life lost and productivity costsAkyol Ersoy B, Karadurmus N, Incegul B, Batum M, Ozcan G, Ceylan Y, Weston G, Hughes R, Poellinger B, Bencina G, Malhan S, Cicin IPoster presented at ISPOR, November 2023View PublicationOncologyTreatment pathways/burden of illness, Economic models
2023.11Indirect cost of HPV-attributable cancer in the United KingdomEngelbrecht K, Ovcinnikova O, Ntais D, Weston G, Hughes R, Bencina GPoster presented at ISPOR, November 2023View PublicationInfectious diseases, OncologyTreatment pathways/burden of illness, Economic models
2023.11Impact of cancer deaths on years of life and productivity losses in Japan in 2019Aguiar-Ibáñez R, Weston G, Hughes R, Abe M, Taniguchi K, Ohno T, Bencina GPoster presented at ISPOR, November 2023View PublicationOncologyTreatment pathways/burden of illness, Economic models
2023.11Assessing 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 RPoster presented at ISPOR, November 2023View PublicationOncologyTreatment pathways/burden of illness, Economic models
2023.11Multi-comparator ICERs in cost-effectiveness analysis to account for changes in clinical practice after the introduction of a new technologyWeston G, Hughes R, Mountain GPoster presented at ISPOR, November 2023View PublicationCardiovascularEconomic models, HTA/reimbursement
2023.11Usage of social return on investment modelling in the analysis of healthcare interventions: A review of current utilisationHarrop D, Hirst A, Hughes R, Weston GPoster presented at ISPOR, November 2023View PublicationEconomic models, Literature/landscape reviews
2023.11Expert elicitation techniques: Informing application in HTA decision-makingRiley D, Fox A, Hirst A, Marciniak A, Heron LPoster presented at ISPOR, November 2023View PublicationEvidence synthesis/utility generation, HTA/reimbursement
2023.11The acceptability of human papillomavirus vaccination in the United Kingdom: A review of the literature on barriers and facilitators to vaccinationKarakusevic A, Heron L, Foss APoster presented at ISPOR, November 2023View PublicationInfectious diseases, VaccinesLiterature/landscape reviews
2023.11Presenting expected net loss curves to better communicate decision uncertainty in cost effectiveness analysisYi Y, Meiwald A, Hirst A, Weston GPoster presented at ISPOR, November 2023View PublicationOncologyEconomic models
2023.11Modelling visual acuity distributions to inform a simplified cost effectiveness analysisHirst A, Perera C, Hughes RPoster presented at ISPOR, November 2023View PublicationOphthalmologyEconomic models
2023.11Budget impact of the Jada System for the treatment of patients with abnormal post-partum bleeding or hemorrhage in the United StatesYong C, Fox A, Hirst A, Hughes R, Mountain G, Seal B, Rood KMPoster presented at ISPOR, November 2023View PublicationWomen's healthEconomic models
2023.11Developing an analysis to determine the value of time when delaying the WHO's seasonal influenza vaccine strain selection recommendationReynard C, Boikos C, Saha S, Hughes R, Brandolini G, Harrop D, Meiwald A, Maleki F, Hu T, Suphaphiphat Allen P, Weston G, Welch VLPoster presented at ISPOR, November 2023View PublicationInfectious diseases, VaccinesLiterature/landscape reviews
2023.11Clinical, economic, and patient-reported impact of obesity in the Asia-Pacific region: A systematic reviewArtime E, Franceschini M, Riley S, Mount JE, Tahbaz A, Flannery C, Newson RSPoster presented at ISPOR, November 2023View PublicationEndocrinology/Metabolic diseasesLiterature/landscape reviews, Treatment pathways/burden of illness
2023.11Clinical, economic, and patient-reported impact of obesity in selected European countries: A systematic reviewArtime E, Rousseau B, Mount JE, Kewley R, Flannery C, Tahbaz APoster presented at ISPOR, November 2023View PublicationEndocrinology/Metabolic diseasesLiterature/landscape reviews, Treatment pathways/burden of illness
2023.11The need for novel mechanisms to tackle the global antimicrobial resistance (AMR) threat: Are innovative payment models enough?Pan J, Franceschini M, Perry RM, Rousseau BPoster presented at ISPOR, November 2023View PublicationInfectious diseasesLiterature/landscape reviews
2023.09A data-driven disease burden model based on molecular classification in endometrial cancer patients in five European countries and the United StatesLi Y, Perera C, Chen L, Mistry R, Young K, Hughes R, Weston G, Lichfield J, Marth CPoster presented at the European Society of Gynaecological Oncology, September 2023Oncology, Women's healthEconomic models, Treatment pathways/burden of illness
2023.09Clinical consensus on first-line treatments for transplant-ineligible patients with newly diagnosed multiple myeloma: Delphi panel of US Hematologists and OncologistsFonseca R, Rossi A, Voelker J, Homan T, Kaila S, Medhekar R, Wilcock J, Karakusevic A, Cochrane J, Bridge D, Perry R, Davies FPoster presented at International Myeloma Society (IMS) 2023View PublicationOncologyTreatment pathways/burden of illness, Evidence synthesis/utility generation
2023.09Musculoskeletal manifestations associated with transthyretin-mediated (ATTR) amyloidosis: A systematic reviewAldinc E, Campbell C, Gustafsson F, Beveridge A, Macey R, Marr L, Summers C, Zhang DBMC Musculoskeletal Disorders 2023 24:751View PublicationRare diseases, Musculoskeletal diseasesLiterature/landscape reviews
2023.07Economic and humanistic burden of HPV-related disease in Indonesia: A qualitative analysisFelsher M, Setiawan D, Varga S, Perry R, Riley D, Newman R, Beveridge A, Oswald C, Kothari S, Sukarom I, Postma MGlobal Public Health, 18:1View PublicationInfectious diseases, OncologyTreatment pathways/burden of illness, Evidence synthesis/utility generation
2023.07Understanding the global burden of influenza in adults aged 18–64 years: A systematic literature review from 2012 to 2022Maleki F, Welch V, Lopez S, Cane A, Langer J, Enstone A, Markus K, Wright O, Hewitt N, Whittle IAdv Ther (2023)View PublicationInfectious diseasesLiterature/landscape reviews, Treatment pathways/burden of illness
2023.07Indirect costs due to lung cancer-related premature mortality in four European countriesBencina G, Chami N, Hughes R, Weston G, Baxter C, Salomonsson S, Demedts IAdv Ther. 2023 Jul;40(7):3056-3069View PublicationOncologyEvidence synthesis/utility generation, Economic models
2023.06Development of Guidelines on Defining and Monitoring Progression of ATTRv Amyloidosis Using the Delphi TechniqueWaddington-Cruz M, Slama MS, Ueda M, Peltier A, Knebel F, Drachman B, Coelho T, Jones A, Middlehurst J, Williamson N, Adams DOral Presentation at Peripheral Nerve Society Meeting, June 2023Rare diseasesQualitative patient-centered research and evaluation of COAs
2023.06Perceptions of Treatment Outcomes in People with Obesity and T2D - A Qualitative StudyPoon JL, O'Hara L, Kendal H, Sully K, Guy M, Bradley H, Tolley C, Mason BDiabetes vol 72,Supp 1,1709P, June 2023View PublicationEndocrinology/Metabolic diseasesQualitative patient-centered research and evaluation of COAs
2023.06Qualitative 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 GermanyLampertico P, Gish R, Reau N, Wedemeyer H, Buti M, Kaushik A, Elwick H, Williamson N, Chohan A, Guy M, Jones R, Yehoshua APoster presented at EASL Congress, June 2023Infectious diseasesQualitative patient-centered research and evaluation of COAs
2023.05Global burden and economic impact of vaccine-preventable cancer mortalityBencina G, Oliver E, Meiwald A, Hughes R, Morais E, Schillinger J, Weston GJournal of Clinical Oncology 41, no. 16_suppl (June 01, 2023) 10542-10542View PublicationOncology, Vaccines, Infectious diseasesTreatment pathways/burden of illness, Economic models
2023.05Designing Fit-for-Purpose Patient Preference Studies - a COA Developer PerspectiveMason B, Gater APoster presented at ISPOR, May 2023. Value in Health, 2023;26(6):S348View PublicationPatient preference research
2023.05Quantifying Patient Preferences for Targeted Therapies in Metastatic Melanoma: A Discrete-Choice ExperimentMason 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 JCPoster presented at ISPOR, May 2023. Value in Health, 2023;26(6):S333View PublicationOncologyPatient preference research
2023.05The impacts of age and gender on mapped EQ-5D-5L utilities and quality-adjusted life years (QALYs) in cancer clinical trialsShaw JW, Bennett B, Russell J, van Hout B, Norman R, Frampton K, Moreno-Koehler A, Taylor F, Cocks KPoster presented at ISPOR, May 2023. Value in Health, 2023;26(6):S334View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2023.05The impacts of age and gender on mapped EQ-5D-5L utilities and quality-adjusted life years (QALYs) in cancer clinical trialsShaw JW, Bennett B, Russell J, van Hout B, Norman R, Frampton K, Moreno-Koehler A, Taylor F, Cocks KPoster presented at ISPOR, May 2023. Value in Health, 2023;26(6): S334.View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2023.05In-trial interview sample size: A review of the published literature Galipeau N, Ollis S, McLafferty M, Love E, Litcher-Kelly LPoster presented at ISPOR, May 2023. Value in Health, 2023;26(6): S339.View PublicationLiterature and COA instrument reviews, Qualitative exit and in-trial interviews
2023.05Patient-Reported Outcomes in Opioid Use Disorder (PR-OUD): Recommendations and Barriers in Clinical Trials and StudiesIbrahim N, Walker M, Waris H, Litcher-Kelly LAbstract accepted ISPOR. Value in Health, 2023;26(6): S315.View PublicationAddictionLiterature and COA instrument reviews
2023.05Evaluating the patient experience with CD55 deficiency with hyperactivation of complement, angiopathic thrombosis, and protein-losing enteropathy (CHAPLE) disease: A deadly ultra-rare pediatric diseaseLitcher-Kelly L, Ollis S, Yaworsky A, Baris Feldman H, Harari O, Ozen A, Jalbert JAbstract accepted at ISPOR. Value in Health, 2023;26(6): S11.View PublicationGenetic diseases, Immunology, Pediatric careQualitative patient-centered research and evaluation of COAs
2023.01Impact of the COVID-19 Pandemic on HPV Vaccinations in Switzerland and Greece: Road to RecoveryGountas I, Favre-Bulle A, Saxena K, Wilcock J, Collings H, Salomonsson S, Skroumpelos A, Sabale UVaccines 2023, 11(2), 258View PublicationInfectious diseases, VaccinesTreatment pathways/burden of illness, Economic models
2023.01Elicitation of health state utility values in retinitis pigmentosa by time trade-off in the United KingdomO'Brien P, Enstone A, Bridge D, Wyn R, Banhazi JClinicoecon Outcomes Res. 2023 Jan 15:15:29-39View PublicationOphthalmology, Genetic diseasesEvidence synthesis/utility generation
2023.01Understanding the barriers and attitudes toward influenza vaccine uptake in the adult general population: A rapid reviewWelch V, Metcalf T, Macey R, Markus K, Sears A, Enstone A, Langer J, Srivastava A, Cane A, Wiemken TVaccines 2023, 11(1), 180View PublicationInfectious diseases, VaccinesLiterature/landscape reviews
2023.01Breast cancer-related mortality in Central and Eastern Europe: Years of life lost and productivity costsBencina G, Chami N, Hughes R, Weston G, Baxter C, Maciejczyk A, Popovic L, Karamousouli E, Salomonsson SJ Med Econ. 2023 Jan-Dec;26(1):254-261View PublicationOncologyEvidence synthesis/utility generation, Economic models
2023High clinical burden of influenza disease in adults aged ≥65 years: Can we do better? A systematic literature reviewLanger J, Moran M, Cane A, Lopez S, Srivastava A, Enstone A, Sears A, Markus K, Heuser M, Kewley R, Whittle IAdvances in Therapy vol.40, 1601–1627 (2023)View PublicationInfectious diseasesLiterature/landscape reviews
2023Expert 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) RegimenPerry R, Beveridge A, Sears A, Rasmussen EAdvances in Therapy 40, 1062–1073 (2023)View PublicationDermatology, ImmunologyEvidence synthesis/utility generation
2023Impact 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 trialWeisel K, Dimopoulos MA, Miguel JS, Paner A, Engelhardt M, Taylor F, Lord-Bessen J, Yip C, Greenwood M, Tang J, Cavo MHemaSphere, 2023;7(3):e843View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2023First-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 outcomesReck 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 DPEuropean Journal of Cancer, 2023;183:174-187View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2023Psychometric evaluation of the Indolent Systemic Mastocytosis Symptom Assessment Form (ISM-SAF©) and determination of a threshold score for moderate symptomsShields AL, Taylor F, Lamoureux RE, Padilla B, Severson K, Green T, Boral A, Akin C, Siebenhaar F, Mar BOrphanet Journal of Rare Diseases, 2023;18:69, https://doi.org/10.1186/s13023-023-02661-1View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2023Healthcare 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 trialHirji I, Cocks K, Moreno-Koehler A, Sen R, Sundberg ATransplant Infectious Disease, 2023;25(3):e14064View PublicationInfectious diseasesPsychometric evaluation and statistical analysis of COAs
2023Content validity of the European Organisation for Research and Treatment of Cancer Quality of Life questionnaire QLQ-C30 for use in cancerCocks 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 AEuropean Journal of Cancer, 2023;178:128-138View PublicationOncologyQualitative patient-centered research and evaluation of COAs
2023Development 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 PRMD Open, 2023;9(1):e002721View PublicationImmunologyPsychometric evaluation and statistical analysis of COAs
2023Qualitative exploration of the visual function impairments and health-related quality of life impacts of amblyopia in adult and pediatric populationsRandhawa S, Griffiths N, O’Brien P, Panter C, Boparai K, Harrad R, Khuddus N, Webber A, Bouchet C, Felizzi FOphthalmolgy and Therapy, 2023; https://doi.org/10.1007/s40123-023-00751-8View PublicationOphthalmology, Pediatric careQualitative patient-centered research and evaluation of COAs, Literature and COA instrument reviews
2023Development 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 diseaseSloesen B, Young A, Forde K, Hodson N, Bentley S, Walsh O, Naujoks C, O'Brien P, Sharma GJournal of Patient Reported Outcomes, 2023;64:https://doi.org/10.1186/s41687-023-00608-5View PublicationOphthalmologyQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2023Psychometric validation and testing of the 10-item pediatric daily chest-related electronic patient reported outcome (ePRO) diaryArbuckle R, Shea T, Marshall C, Trigg A, Stein J, Albrecht HH Journal of Patient Reported Outcomes, 2023;6:https://doi.org/10.1186/s41687-023-00546-2View PublicationRespiratory diseases, Pediatric carePsychometric evaluation and statistical analysis of COAs
2023The 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 populationsWebber A, Randhawa S, Felizzi F, Soos M, Arbuckle R, O'Brien P, Harrad R, Khuddus N, Bouchet C, Panter COphthalmolgy and Therapy, 2023;12:1281-1313View PublicationOphthalmology, Pediatric careQualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Literature and COA instrument reviews
2023Individual Differences in the Patient Experience of Relapsing Multiple Sclerosis (RMS): A Multi-Country Qualitative Exploration of Drivers of Treatment Preferences Among People Living with RMSTatlock S, Sully K, Batish A, Finbow C, Neill W, Lines C, Brennan R, Adlard R, Backhouse TThe Patient, 2023;16:345-357View PublicationCNS/NeurologyQualitative patient-centered research and evaluation of COAs
2023Use of the European Organisation for Research and Treatment of Cancer Multiple Myeloma Module EORTC QLQ-MY20): A Review of the Literature 25 Years After DevelopmentForde K, Cocks K, Wells JR, McMillan I, EORTC Quality of Life GroupBlood Cancer Journal, 2023;13(1):79View PublicationOncologyLiterature and COA instrument reviews
2023Health related quality of life of patients with resistant/intolerant chronic phase chronic myeloid leukaemia treated with asciminib or bosutinib in the phase 3 ASCEMBL trialRea D, Boquimpani C, Mauro MJ, Minimai Y, Allepuz A, Maheshwari VK, D[Alessio D, Wu Y, Lawrance R, Narbutas S, Sharf G, HochhausLeukaemia, 2023;37:1060-1067View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2023Psychometric Validation of the ViSIO-PRO and ViSIO-ObsRO in Retinitis Pigmentosa and Leber Congenital AmaurosisFischer 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 IOphthalmolgy and Therapy, 2023;12:1359-1386View PublicationOphthalmologyPsychometric evaluation and statistical analysis of COAs
2022.12Lost productivity due to head and neck cancer mortality in Hungary, Poland, and RomaniaBencina G, Chami N, Hughes R, Weston G, Golusiński PJJournal of Cancer Policy vol. 4, Dec 2022, 100366View PublicationOncologyEvidence synthesis/utility generation, Economic models
2022.11Real-world assessment of orphan drugs via the new Joint Clinical Assessment route in EuropeFranceschini M, Heuser M, Cochrane J, O’Donovan P, Perry RPoster presented at ISPOR, November 2022. Value in Health vol. 25,12,S312View PublicationRare diseasesLiterature/landscape reviews, HTA/reimbursement, Evidence synthesis/utility generation
2022.11The impact of COVID-19 pandemic on paediatric vaccination coverage ratesCollings H, Karakusevic A, Newman RPoster presented at ISPOR, November 2022. Value in Health vol. 25,12,S195View PublicationInfectious diseases, Vaccines, Pediatric careEvidence synthesis/utility generation
2022.11Cost-effectiveness of earlier whole-genome sequencing in rare genetic childhood epilepsySuokas A, Yi Y, Hirst APoster presented at ISPOR, November 2022. Value in Health vol. 25,12,S68View PublicationCNS/Neurology, Genetic diseases, Rare diseases, Pediatric careEconomic models
2022.11Health 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 LPoster presented at ISPOR, November 2022. Value in Health vol. 25,12,S160View PublicationOncologyEconomic models, Evidence synthesis/utility generation
2022.11Assessing the impact of Anti-PD-(L)1 inhibitors on cancer care health and budget in GreeceKtena D, Dalakaki E, Dimitriadis I, Mountain G, Hughes R, Clarke-Melville S, Roediger A, Naoum P, Athanasakis KPoster presented at ISPOR, November 2022. Value in Health vol. 25,12,S267View PublicationOncologyEconomic models, Evidence synthesis/utility generation
2022.11Use of general population utilities in NICE: Highly specialised technology appraisals of treatments with the potential to restore normal physiologyJohnson B, Cochrane J, Mountain G, Franceschini M, Weston GPoster presented at ISPOR, November 2022. Value in Health vol. 25,12,S313-314View PublicationRare diseasesEvidence synthesis/utility generation
2022.11Economic and humanistic burden of visual impairment and blindness in Brazil: A grey literature reviewForestiero F, O'Brien P, Lavelle P, Perry RM, Banhazi JPoster presented at ISPOR, November 2022. Value in Health vol. 25,12,S149View PublicationOphthalmologyLiterature/landscape reviews
2022.11Digital health interventions: A review of economic evaluation guidelines from health technology assessment agenciesZhou A, Yi YPoster presented at ISPOR, November 2022. Value in Health vol. 25,12,S301-302View PublicationHTA/reimbursement
2022.11Inclusion of environmental sustainability in the economic analysis of healthcare interventions: A review of policy approachesHughes R, Hirst A, Brandolini GPoster presented at ISPOR, November 2022. Value in Health vol. 25,12,S179View PublicationAccess/HEOR consultancy
2022.11Appraisal of the multi-criteria decision analysis method to improve value assessment of new therapiesRiley D, Wyn R, Fox A, Wilcock J, Heron LPoster presented at ISPOR, November 2022. Value in Health vol. 25,12,S73View PublicationLiterature/landscape reviews, HTA/reimbursement, Evidence synthesis/utility generation
2022.11Assessing impact of kidney cancer-related premature mortality and productivity loss in Greece and PortugalBencina G, Chami N, Hughes R, Weston G, Baxter C, Salomonsson SPoster presented at ISPOR, November 2022. Value in Health vol. 25,12,S122View PublicationOncology, NephrologyEvidence synthesis/utility generation
2022.11Triple negative breast cancer-related mortality in Central and Eastern Europe: Years of life lost and productivity costsBencina G, Chami N, Hughes R, Weston G, Baxter C, Karamousouli E, Salomonsson SPoster presented at ISPOR, November 2022. Value in Health vol. 25,12,S153View PublicationOncologyEvidence synthesis/utility generation
2022.11The 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 RPoster presented at ISPOR, November 2022. Value in Health vol. 25,12,S225View PublicationEndocrinology/Metabolic diseases, ImmunologyLiterature/landscape reviews
2022.11Understanding the prevalence and burden of diabetic ketoacidosis (DKA) in people with T1DM at high risk for DKA: A structured literature reviewRousseau B, Varughese B, Oliver L, Bhaila RPoster presented at ISPOR, November 2022. Value in Health vol. 25,12,S217View PublicationEndocrinology/Metabolic diseases, ImmunologyLiterature/landscape reviews
2022.11From 'Being alive' to 'living': why the PRO data matters?Thackray R, Joshi NPoster presented at PHUSE-EU Connect, November 2022Psychometric evaluation and statistical analysis of COAs
2022.11Dengue Virus Daily Diary (DENV-DD) - A new patient-reported outcome (PRO) tool measuring dengue symptom intensity: findings from a DEN-3 human challenge studyMarks 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 SJPoster presented at American Society of Tropical Medicine and Hygiene Conference, November 2022Infectious diseasesQualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs
2022.11Qualitative 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 SPoster presented at ISPOR, November 2022. Value in Health, 2022;25(12):S407-S408View PublicationOphthalmologyQualitative patient-centered research and evaluation of COAs
2022.11Content 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 RPoster presented at ISPOR, November 2022. Value in Health, 2022;25(12):S394-S385View PublicationOphthalmologyQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2022.11Modelling time-to-death utilities as a continuous function, using a rich dataset of patients with non-small cell lung cancerHatswell AJ, Chaudhary MA, Moreno-Koehler A, Shaw JW, Penrod JR, Lawrance RPoster presented at ISPOR, November 2022. Value in Health, 2022;25(12):S420View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2022.11Racial and Ethnic Minority Inclusion in Clinical Outcome Assessment (COA) Research: A Reflection on Current PracticesSu S, Jones A, Walker M, Nieves A, Waris H, Klooster BPoster presented at ISPOR, November 2022. Value in Health, 2022;25(12):S388View PublicationLiterature and COA instrument reviews
2022.11Qualitative Approaches Using Global Assessments to Support Meaningful Within-person Change (MWPC) Estimates for Patient-reported Outcome (PRO) Questionnaires in Regulated Clinical TrialsOllis S, Galipeau N, McLafferty M, Su S, Litcher-Kelly LPoster presented at ISPOR, November 2022. Value in Health, 2022;25(12): S417.View PublicationQualitative patient-centered research and evaluation of COAs
2022.11Who We Are Matters: Inclusive Demographic Data Collection in Patient-Centered Outcomes ResearchRupinski K, Berger S, Klooster B, Moreno-Koehler A, Ibrahim N, Dickie GPoster presented at ISPOR, November 2022. Value in Health, 2022;25(12): S413.View PublicationLiterature and COA instrument reviews
2022.1Treatment failure and transition to next-line therapy in myelofibrosis: A modified Delphi panel approachMascarenhas J, Nguyen H, Saunders A, Oliver L, Tomkinson H, Perry R, McBride AClinical Lymphoma Myeloma and Leukemia, Vol 22, Suppl 2, October 2022, S323View PublicationOncologyEvidence synthesis/utility generation
2022.1Qualitative in-trial or exit interview methods to elicit supplementary patient experience data during clinical studiesWilliamson N, Burrows K, Bonner NWorkshop presented at ISOQOL, October 2022Qualitative exit and in-trial interviews
2022.1The experience of vasomotor symptoms in postmenopause: development of a conceptual model and review of existing patient-reported outcome (PRO) measuresBradley H, Mason B, Barclay M, Gater A, Tolley C, Haberland CPoster presented at ISOQOL, October 2022Women's healthCOA instrument development or modification, Literature and COA instrument reviews
2022.1The Amblyopia Quality of Life (AmbQoL): Development and content validation of a novel Clinical Outcome Assessment (COA) instrument for use in adult and pediatric amblyopia populationsRandhawa S, Cooper C, Griffiths N, Soos M, Panter C, Arbuckle A, Harrad R, Khuddus N, Webber A, Bouchet C, O'Brien P, Felizzi FOral presentation at ISOQOL, October 2022View PublicationOphthalmology, Pediatric careQualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Literature and COA instrument reviews
2022.1Psychometric Validation of the Severity of Chronic Cough Diary, Leicester Cough Questionnaire, and a Visual Analogue Scale in Patients with Chronic CoughGater A, Clarke N, Trigg A, Haberland COral presented at ISOQOL, October 2022Respiratory diseasesPsychometric evaluation and statistical analysis of COAs
2022.1Patient-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 SeriesFloden, Coens C, Lawrance RWorkshop presented at ISOQOL, October 2022Psychometric evaluation and statistical analysis of COAs
2022.1Evaluation 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 APoster presented at ISOQOL, October 2022Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2022.09Treatment failure and transition to next-line therapy in myelofibrosis: A modified Delphi panel approachMascarenhas J, Nguyen H, Saunders A, Oliver L, Tomkinson H, Perry R, McBride APoster presented at the Society of Hematologic Oncology (SOHO) congress, September 2022OncologyEvidence synthesis/utility generation
2022.09Indirect costs due to lung cancer-related premature mortality in four European countriesBencina G, Chami N, Hughes R, Weston G, Baxter C, Salomonsson S, Demedts IPoster presented at ESMO, September 2022View PublicationOncologyEvidence synthesis/utility generation, Economic models
2022.09Nivolumab plus platinum-doublet chemotherapy versus chemotherapy as neoadjuvant treatment for resectable non-small cell lung cancer: health-related quality of life outcomes from CheckMate 816Felip 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 JOral presentation at ESMO, September 2022; Annals of Oncology, 2022;33(Supp 7): S973-S974.View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2022.09Exploring the patient experience of Amblypopia via a qualitative literature review and patient, caregiver and clinician interviewsRandhawa S, Griffiths N, Panter C, Harrad R, Khuddus N, Webber A, Bouchet C, O'Brien P, Felizzi FPoster presented at World Ophthalmology Congress, September 2022OphthalmologyLiterature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs
2022.09932MO 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 816Felip 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 JOral presentation at ESMO, September 2022. Annals of Oncology, 2022;33(Supp 7):S973-S974View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2022.08Unmet needs in the management of immune-mediated thrombotic thrombocytopenic purpura and the potential role of caplacizumab in the UK—A modified-Delphi studyScully M, Dutt T, Lester W, Farrington E, Lockwood S, Perry R, Holmes SeJHaem vol. 3,3,619-627, August 2022View PublicationHematology, Rare diseasesEvidence synthesis/utility generation
2022.07The burden of rotavirus-associated acute gastroenteritis in the elderly: Assessment of the epidemiology in the context of universal childhood vaccination programsKarakusevic A, Devaney P, Enstone A, Kanibir N, Hartwig S, Carias CExpert review of Vaccines 2022. Jul;21(7):929-940View PublicationGastroenterology, Infectious diseasesLiterature/landscape reviews, Treatment pathways/burden of illness
2022.06Strengths and limitations of migraine management guidelines in the USA and Europe: A targeted literature reviewPerry R, Mills K, Ford J, McCosh ZPoster presented at HTAi, June 2022View PublicationCNS/NeurologyLiterature/landscape reviews
2022.06Clinical 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 RPresented at European Psychiatric Association, June 2022View PublicationCNS/NeurologyEvidence synthesis/utility generation
2022.06Burden associated with Fabry disease and its treatment in 12- to 15-year-olds: Results from an international surveyMcCaughey G, MacCulloch A, Bashorum L, Evans O, Humphries A, Perry RPoster presented at the RCPCH conference, June 2022View PublicationGenetic diseases, Rare diseasesTreatment pathways/burden of illness
2022.06Estimands in oncology: answers to old questions using the estimand frameworkEnglert S, Sailer O, Lawrence R, Bornkamp BPresented at PSI Web, June 2022View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2022.06Japanese 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 RInternational Journal of Hematology, 116:500-527View PublicationHematologyCOA instrument development or modification
2022.05Using multi-state modelling for health economic evaluationsYi Y, Hirst APoster presented at ISPOR, May 2022. Value in Health vol. 25,7,S353View PublicationOncologyHTA/reimbursement, Evidence synthesis/utility generation
2022.05The impact of informal caregiving in Alzheimer’s disease dementia: A health utility study in the United KingdomBelger M, Dell’Agnello G, Enstone A, Wyn R, Tockhorn-Heidenreich APoster presented at ISPOR, May 2022. Value in Health vol. 25,7,S545View PublicationCNS/NeurologyEvidence synthesis/utility generation
2022.05Assessing the utility associated with caregiving in Alzheimer's disease (AD) with mild cognitive impairment (MCI) and AD dementia in JapanBelger M, Dell’Agnello G, Ueda K, Enstone A, Wyn R, Tockhorn-Heidenreich APoster presented at ISPOR, May 2022. Value in Health vol. 25,7,S551-552View PublicationCNS/NeurologyEvidence synthesis/utility generation
2022.05Bridging 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 JEPoster presented at ISPOR, May 2022. Value in Health vol. 25,7,S531View PublicationOphthalmology, ImmunologyEvidence synthesis/utility generation
2022.05PCR101 Item Response Theory Analysis of the IlqiGriffiths P, Grant L, Arenson E, Maheshwari VK, Viana RPoster presented at ISPOR, May 2022. Value in Health; 2022;25(7):S560View PublicationHematologyPsychometric evaluation and statistical analysis of COAs
2022.05PCR14 Development and Content Evaluation of a Novel Osteoporotic Vertebral Fracture Patient-Reported Outcome QuestionnaireYeh E, Su S, Banderas B, Chatterton K, Dickie GPoster presented at ISPOR, May 2022. Value in Health, 2022;25(7): S543.View PublicationMusculoskeletal diseasesQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2022.04Assessing the impact of kidney cancer-related premature mortality and productivity loss in Greece and PortugalBencina G, Chami N, Hughes R, Weston G, Baxter C, Salomonsson SExpert Rev Pharmacoecon Outcomes Res. 2023 Apr;23(4):391-398View PublicationOncology, NephrologyEvidence synthesis/utility generation
2022.04Economic and humanistic burden of HPV-related disease in Indonesia: A qualitative analysisFelsher M, Setiawan D, Varga S, Della Pia R, Riley D, Newman R, Beveridge A, Oswald C, Kothari S, Postma MPresentation at EUROGIN, April 2022Infectious diseasesLiterature/landscape reviews, Treatment pathways/burden of illness
2022.04Budget 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 StatesLi XJ, Muston D, Ramakrishnan K, Black CM, Hughes R, Weston G, Lucherini SInternational Journal of Radiation Oncology, 197, Vol 112, Issue 5, E55, April 2022View PublicationOncologyEconomic models
2022.03Budget 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 USHuang M, Haiderali A, Swales O, Yi Y Poster presented at AMCP, March 2022View PublicationOncologyEconomic models
2022.02Budget 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 StatesLi XJ, Muston D, Ramakrishnan K, Black CM, Hughes R, Weston G, Lucherini SPoster presented at the Multidisciplinary Head and Neck Cancers Symposium, February 2022View PublicationOncologyEconomic models
2022.01Health-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 LPoster presented at ASCO Gastrointestinal Cancers Symposium, January 2022. Journal of Clinical Oncology, 2022;40(4):262View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2022.01Health-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 648Bridgewater J, Chau I, Gricar J, Blum SI, Taylor F, Lawrance R, Padilla B, Yip C, Wyrwicz LPoster presented at ASCO-GI, January 2022. Journal of Clinical Oncology, 2022;40(4 _suppl): 262.View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2022Utility assessment of moderate to severe thyroid eye disease health statesSmith TJ, Cockerham K, Lelli G, Choudhary C, Taylor S, Barretto N, Enstone A, Oliver L, Lynch J, Holt RJJAMA Ophthalmol. 2023; 141(2):159-166View PublicationOphthalmology, ImmunologyEvidence synthesis/utility generation
2022Preference for type 2 diabetes therapies in the United States: A discrete choice experimentShubrook J, Radin M, Ali A, Chubb B, DiPietrantonio K, Collings H, Wyn R, Smith MAdvances in Therapy vol. 39, 4114–4130 (2022)View PublicationEndocrinology/Metabolic diseasesEvidence synthesis/utility generation
2022Disutility of injectable therapies in obesity and type 2 diabetes mellitus: General population preferences in the UK, Canada, and ChinaMcEwan P, Baker-Knight J, Ásbjörnsdóttir B, Yi Y, Fox A, Wyn RThe European Journal of Health Economics, 24, 187–196 (2023)View PublicationEndocrinology/Metabolic diseasesEvidence synthesis/utility generation
2022Real-world impact of rotavirus vaccination in European healthcare settings: A systematic literature reviewBenčina G, Costantino C, Mameli C, Sabale U, Murtagh J, Newman R, Ahern A, Bhaila R, Orrico Sanchez A, Martinon-Torres F, Carias CExpert review of Vaccines, vol. 21, 8, 1121-1136 (2022)View PublicationGastroenterology, Infectious diseases, VaccinesLiterature/landscape reviews
2022Vaccine uptake and barriers to vaccination among at-risk adult populations in the USKolobova I, Nyaku MK, Karakusevic A, Bridge D, Fotheringham I, O’Brien MHuman Vaccines and Immunotherapeutics, 18:5View PublicationVaccinesLiterature/landscape reviews
2022Burden of vaccine-preventable diseases among at-risk adult populations in the USKolobova I, Nyaku MK, Karakusevic A, Bridge D, Fotheringham I, O’Brien MHuman Vaccines and Immunotherapeutics, 18:5View PublicationVaccinesTreatment pathways/burden of illness
2022Burden associated with Fabry disease and its treatment in 12- to 15-year-olds: Results from an international surveyMcCaughey G, MacCulloch A, Bashorum L, Evans O, Humphries A, Perry RArchives of Disease in Childhood 2022;107:A201-A202View PublicationGenetic diseases, Rare diseasesEvidence synthesis/utility generation, Treatment pathways/burden of illness
2022Three-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 cancerChang 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 YLung Cancer, 2022;165: 71-81.View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2022Interleukin-1 trap rilonacept improved health-related quality of life and sleep in patients with recurrent pericarditis: Results from the Phase 3 clinical trial RHAPSODYBrucato 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 JJournal of the American Heart Association, 2022;11(20): e023252.View PublicationCardiovascularPsychometric evaluation and statistical analysis of COAs
2022Psychometric performance of the Primary Mitochondrial Myopathy Symptom Assessment (PMMSA) in a randomized, double-blind, placebo-controlled crossover study in subjects with mitochondrial diseaseGwaltney C, Stokes J, Aiudi A, Mazar I, Ollis S, Love E, Karaa A, Houts CR, Wirth RJ, Shields ALJournal of Patient-Reported Outcomes, 2022;6: 129.View PublicationGenetic diseases, Musculoskeletal diseasesPsychometric evaluation and statistical analysis of COAs
2022Novel Questionnaires for assessing signs and symptoms of Eosinophilic Esophagitis in childrenKamat S, Yaworsky A, Guillemin I, Krohe M, Litcher-Kelly L, McLafferty M, Lamoureux RE, Lowe C, Chehade M, Spergel JM, Weinfurt K, Turner-Bowker DMThe Journal of Allergy and Clinical Immunology: In Practice, 2022;10(7): 1856-1863.View PublicationAllergies, ImmunologyLiterature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2022Determining 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 YADermatology and Therapy, 2022;12: 2817–2827.View PublicationDermatologyPsychometric evaluation and statistical analysis of COAs
2022Estimands in Oncology ASA scientific working groupSiegel J, Wang Y, Lawrance R, Weber H-J, Wei J, Liu Y, Mercier F, Degtyarev E, Rufibach K, Englert SPoster presented at Asia BIOP, 2022OncologyPsychometric evaluation and statistical analysis of COAs
2022Special interest group "Estimands in Oncology", sponsored by PSI and EFSPIWei J, Wang Y, Lawrance R, Weber H-J, Liu Y, Mercier F, siegel J, Degtyarev E, Rufibach K, Englert SPoster presented at China Summit, 2022OncologyPsychometric evaluation and statistical analysis of COAs
2022Patient, family member and physician perspectives and experiences with AML treatment decision-makingLeBlanc 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 ROncology and Therapy, 2022;10:421-440View PublicationOncologyQualitative patient-centered research and evaluation of COAs
2022Qualitative research with patients and physicians to assess content validity and meaningful change on ESSDAI and ESSPRI in Sjögren’sCooper C, Wratten S, Williams-Hall R, Bookman AAM, Ndife B, Hueber W, Goswami PRheumatology and Therapy, 2022;9:1499-1515View PublicationImmunologyQualitative patient-centered research and evaluation of COAs
2022Patient experience of moderate asthma attacks: qualitative research in the USA and GermanyTabberer M, Wells JR, Chandler D, Abetz-Webb L, Zhang S, Meeraus W, Fowler A, Slade DJournal of Patient Reported Outcomes, 2022;6:117View PublicationRespiratory diseasesQualitative patient-centered research and evaluation of COAs
2022Comparison of literature review, social media listening, and qualitative interview research methods in generating patient-reported symptom and functional impact concepts of presbyopiaFindley A, Sharma G, Bentley S, Arbuckle R, Patalano F, Naujoks C, Kommineni J, Tyagi N, Lehane A, Wolffsohn JS, chiva-Razavi SOphthalmolgy and Therapy, 2022;12:501-516View PublicationOphthalmologyLiterature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs
2022Content validity of Sjogren's syndrome symptom diary and functional Assessment of Chronic Illness Therapy-Fatigue in Patients with Shogren'sGriffiths N, Wratten S, Flynn J, Bookman AA, Ndife B, Hueber W, Goswami PRheumatology and Therapy, 2022;9(6):1559-1574View PublicationImmunologyQualitative patient-centered research and evaluation of COAs
2022Qualitative evaluation of the symptoms and quality of life impacts of long-chain fatty acid oxidation disordersWilliams-Hall R, Tinsley K, Kruger E, Johnson C, Bowden A, Cimms T, Gater ATherapeutic Advances in Endocrinology and Metabolism, 2022;13:20420188211065655View PublicationEndocrinology/Metabolic diseasesQualitative patient-centered research and evaluation of COAs
2022How 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 thresholdGriffiths P, Sims J, Williams A, Williamson N, Cella D, Brohan E, Cocks KQuality of Life Research, 2022;32:1255-1264View PublicationPsychometric evaluation and statistical analysis of COAs
2022Three-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 cancerChang 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 YLung Cancer, 2022;165:71-81View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2022How scoring limits the usability of minimal important differences (MIDs) as responder definition (RD): an exemplary demonstration using EORTC QLQ-C30 subscalesCocks K, Buchanan JQuality of Life Research, 2022;32:1247-1253View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2022Comparing 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 measuresEremenco S, Chen W-H, Blum SI, Bush EN, Bushnell DM, DeBusk K, Gater A, Nelsen L, Coons SJQuality of Life Research, 2022;31:3501-3512View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2022Validity of a single-item indicator of treatment side effect bother in a diverse sample of cancer patientsGriffiths P, Peipert JD, Leith A, Rider A, Morgan L, Cella D, Cocks KSupportive Care in Cancer, 2022;30:3613-3623View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2022The 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 painGuan Y, Nguyen AM, Wratten S, Randhawa S, Weaver J, Arbelaez F, Fauconnier A, Panter CJournal of Patient Reported Outcomes, 2022;6:5, https://doi.org/10.1186/s41687-021-00409-8View PublicationWomen's healthQualitative patient-centered research and evaluation of COAs, Literature and COA instrument reviews, COA instrument development or modification
2022Minimally important differences of EORTC QLQ-C30 scales in patients with lung cancer or malignant pleural mesothelioma – Interpretation guidance derived from two randomized EORTC trialsKoller M, Musoro JZ, Tomaszewski K, Coens C, King MT, Sprangers MAG, Groenvold M, Cocks K, Velikova G, Flechtner H-H, Bottomley ALung Cancer, 2022;167:65-72View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2022Generation 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 VLupus Science and Medicine, 2022;9:e000712View PublicationImmunologyQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2022A qualitative study to explore the symptoms and impacts of Crohn's disease and to develop the Crohn's Disease DiaryWilliams-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 TQuality of Life Research, 2022;32:209-223View PublicationGastroenterology, ImmunologyQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2022Development of a patient-reported outcome (PRO) tool to support joint health management for patients with haemophilia B aged 8 years and olderBladen M, Sivasubramaniyam S, Klooster B, Shields A, Khan NPoster presented at European Association for Haemophilia and Allied DisordersHematology, Pediatric careQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2022Understanding patient and caregiver perspectives using a dyad approach for data collection: A systematic review of the literatureLoftus J, Yaworsky A, Turner-Bowker DM, Palladino A, Lamoureux R, Love E, Pleil AMPatient Experience Journal, 2022;9(1): 71-81.View PublicationLiterature and COA instrument reviews
2021.12Exploring the impact of heterogeneity in economic evaluations: Current practice and implicationsKomakoma L, Yi YPoster presented at virtual ISPOR, December 2021. Value in Health vol. 25,1,S93View PublicationRare diseasesLiterature/landscape reviews, HTA/reimbursement, Access/HEOR consultancy
2021.12Landscape review exploring acceptability of oncology surrogate endpoints by NICE (England), CADTH (Canada) and PBAC (Australia) from 2010 to 2021Brien H, Humphries AC, Wu E Poster presented at virtual ISPOR, December 2021. Value in Health vol. 25,1,S179View PublicationOncologyLiterature/landscape reviews
2021.12What is are the PRO objectives & how are they being analysed - applying the estimand frame. "Backfitting" - MMRM & Time to deteriorationLawrance R, Floden L, Skaltsa K, Siegel J, Degtyarev E, Regnault A, Huang X, Hudgens S, Bring J, Corson S, Hadi MPRO Task ForceView PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2021.12Impact 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 trialWeisel K, Dimopoulos MA, San Miguel J, Paner A, Engelhardt M, Taylor F, Lord-Bessen H, Yao D, Yip C, Greenwood M, Tang J, Cavo MPresented at the American Society of Hematology (ASH) Annual Meeting, December 2021. Blood, 2021;138(Supplement 1): 1662.View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2021.11Psychometric Evaluation of the Idiopathic Hypersomnia Severity ScaleBanderas B, Morris S, Hickey L, Lowe C, Arenson E, Lin J, Chandler P, Dauvilliers YPoster presented at Psych Congress, San Antonio TX, USA, 29th October to 1st November 2021. Neurology, 2022;98(18 Supplement): 1169.View PublicationCNS/NeurologyPsychometric evaluation and statistical analysis of COAs
2021.1Content Validity of the Idiopathic Hypersomnia Severity ScaleSrivastava B, Morris S, Banderas B, Lowe C, Dauvilliers YPoster presented at 146th Annual Meeting of the American Neurological Association, 17th to 19th October 2021CNS/NeurologyQualitative patient-centered research and evaluation of COAs
2021.09Treatment-resistant depression: Expert consensus identified real-world experience and individualized care as key considerations for novel treatments in major depressive disorderNash 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 RPoster presented at the virtual National Network of Depression Centers Annual Conference, September 2021CNS/NeurologyEvidence synthesis/utility generation
2021.07Development 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 RHealth and Quality of Life Outcomes, 19:184View PublicationMusculoskeletal diseases, Genetic diseases, Rare diseasesCOA instrument development or modification, Qualitative patient-centered research and evaluation of COAs
2021.05Predicting the impact of vaccination strategies in the COVID-19 pandemic using a Susceptible-Exposed-Infectious-Removed (SEIR) modelSong W, Yi YPoster presented at virtual ISPOR, May 2021. Value in Health vol. 24,1,S108View PublicationInfectious diseases, VaccinesEconomic models, Access/HEOR consultancy
2021.05Pet owners’ willingness to pay for therapy outcomes in feline pain associated with osteoarthritisLongstaff L, Bartram D, Gildea E, Wright A, Riley D, Nagda N, DiPietrantonio K, Enstone A, Wyn RPresented at the BSAVA congress, May 2021View PublicationAnimal healthEvidence synthesis/utility generation
2021.05Healthcare resource utilization of patients with resected esophageal cancer or gastroesophageal junction cancer receiving adjuvant nivolumab treatment versus placebo: results from the CheckMate 577 trialLawrance R, Singh P, Leso A, Moreno-Koehler A, Padilla B, Sun X, Taylor F, Blum SPoster presented at ISPOR, May 2021. Value in Health, 2021;24(1): S34-S35.View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2021.04Systematic literature review of the epidemiology of advanced prostate cancer and associated HRR gene alterationsShore N, Oliver L, Shui I, Gayle A, Wong OY, Kim J, Payne S, Amin S, Ghate SJournal of Urology, vol. 205, 4, 977-986 (April 2021)View PublicationOncologyLiterature/landscape reviews
2021.01Preference for oral and injectable GLP-1 RA therapy profiles in Japanese patients with type 2 diabetes: A discrete choice experimentIgarashi A, Bekker Hansen B, Langer J, Tavella F, Collings H, Davies N, Wyn RAdv Ther. 2021 Jan;38(1):721-738View PublicationEndocrinology/Metabolic diseasesEvidence synthesis/utility generation
2021Burden of male hypogonadism and major co-morbidities, and the clinical, economic and humanistic benefits of testosterone therapy: A narrative reviewYeo S, Holl K, Peñaherrera N, Wissinger U, Anstee K, Wyn RClinicoecon Outcomes Res. 2021;13:31-38View PublicationMen's health, Urology/UrogenitalTreatment pathways/burden of illness
2021Real-world use of ceftolozane/tazobactam: A systematic literature reviewPuzniak L, Dillon R, Palmer T, Collings H, Enstone AAntimicrob Resist Infect Control 10, 68 (2021)View PublicationInfectious diseasesLiterature/landscape reviews
2021Systematic literature review of real-world evidence of ceftolozane/tazobactam for the treatment of respiratory infectionsPuzniak L, Dillon R, Palmer T, Collings H, Enstone AInfectious Diseases and Therapy, 10, 1227–1252 (2021)View PublicationInfectious diseases, Respiratory diseasesLiterature/landscape reviews
2021Understanding the unmet needs in insomnia treatment: A systematic literature review of real-world evidenceCampbell R, Chabot I, Rousseau B, Bridge D, Nicol G, Meier GInternational Journal of Neuroscience, DOI: 10.1080/00207454.2021.1995383View PublicationCNS/NeurologyLiterature/landscape reviews
2021Minimally important differences for the EORTC QLQ-C30 in prostate cancer clinical trialsGamper EM, Musoro JZ, Coens C, Stelmes J-J, Falato C, Groenvold M, Velikova G, Cocks K, Flechtner H-H, King MT, Bottomley ABMC Cancer, 2021;21:1083, https://doi.org/10.1186/s12885-021-08609-7View PublicationOncology, Men's healthPsychometric evaluation and statistical analysis of COAs
2021Linguistic validation of the Canine Brief Pain Inventory (CBPI) for global useWells J, Young A, Crane A, Moyaert H, Michels G, Wright AFrontiers in Veterinary Science, 2021;8, https://doi.org/10.3389/fvets.2021.769112View PublicationAnimal healthCOA instrument development or modification
2021FABry Disease Patient-Reported Outcome-GastroIntestinal (FABPRO-GI): A new Fabry disease-specific gastrointestinal outcomes instrumentShields AL, Lamoureux RE, Taylor F, et alQuality of Life Research, 2021;30: 2983–2994.View PublicationGenetic diseases, Rare diseases, GastroenterologyQualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Literature and COA instrument reviews
2021Development 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 FOrphanet Journal of Rare Disease, 2021;16: 414.View PublicationHematology, Rare diseasesQualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Literature and COA instrument reviews
2021A 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/s41687-021-00286-1View PublicationMusculoskeletal diseasesQualitative patient-centered research and evaluation of COAs
2021Reliability, 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 KFuture Oncology, 2021;17(3):3951-3964View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2021Qualitative 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 VBritish journal of Haematology, 2021;194(4):759-766View PublicationHematology, ImmunologyQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2021Patients’ 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 CHealth and Quality of Life Outcomes, 2021,19:7View PublicationWomen's healthQualitative patient-centered research and evaluation of COAs
2021A qualitative exploration of the patient experience of erosive and non-erosive hand osteoarthritisPanter C, Berry P, Chauhan D, Fernandes S, Gatsi S, Park J, Wells JR, Arbuckle RJournal of Patient Reported Outcomes, 2021;5:18View PublicationMusculoskeletal diseasesQualitative patient-centered research and evaluation of COAs
2021A 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 dimensionsShaw JW, Bennett B, Trigg A, DeRosa M, Taylor F, Kiff C, Ntais D, Noon K, King MT, Cocks KValue in Health, 2021;24(11):1651-1659View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2021Understanding 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, VuillerotBMC Neurology, 2021;21:143View PublicationCNS/Neurology, Genetic diseases, Rare diseases, Musculoskeletal diseasesQualitative patient-centered research and evaluation of COAs, Psychometric evaluation and statistical analysis of COAs
2021Patient-Reported Symptoms and Health-Related Quality of Life Impacts of Idiopathic HypersomniaSrivastava B, Morris S, Banderas B, Lowe C, Dauvilliers YPoster presented at Annual Meeting of the American Neurological AssociationCNS/NeurologyQualitative patient-centered research and evaluation of COAs
2021Clinically 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 PublicationOphthalmologyPsychometric evaluation and statistical analysis of COAs
2021Development and content validity of the Barth Syndrome Symptom Assessment (BTHS‑SA) for adolescents and adultsGwaltney C, Stokes J, Aiudi A, Mazar I, Ollis S, Love E, Shields AOrphanet Journal of Rare Disease, 2021;16: 264. View PublicationGenetic diseases, Rare diseases, Pediatric careQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2021PROM data visualization in the clinical setting: what do clinicians need to see?Henkle E, Arenson EWorkshop presented at ISOQOL Virtual 2021Literature and COA instrument reviews
2021Health-related quality of life in patients with recurrent pericarditis: results from a phase 2 study of rilonaceptLin 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 JBMC Cardiovascular Disorders, 2021.View PublicationCardiovascularQualitative patient-centered research and evaluation of COAs, Psychometric evaluation and statistical analysis of COAs
2021Systematic review of patient experience with a less frequent injection schedule for growth hormone deficiencyLoftus J, Yaworsky A, Roland C, Turner-Bowker D, McLafferty M, Su Sylvia, Lamoureux RPoster presented at AMCP Annual Meeting 2021Endocrinology/Metabolic diseasesLiterature and COA instrument reviews
2021Psychometric evaluation of the Indolent Systemic Mastocytosis Symptom Assessment Form (ISM-SAF) in a phase 2 clinical studyPadilla B, Shields AL, Taylor F, Li X, McDonald J, Green T, Boral AL, Lin HM, Akin C, Siebenhaar F, Mar BOrphanet Journal of Rare Disease, 2021;16: 434.View PublicationHematologyPsychometric evaluation and statistical analysis of COAs
2021Psychometric 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 JLeukemia Research, 2021;108: 106606.View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2021A 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 KCAnn Allergy Asthma Immunol, 2021;126(1): 61-68.View PublicationImmunologyQualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Literature and COA instrument reviews
2021Development and Content Validity of a Novel Myelodysplastic Syndromes Symptom DiaryVallow S, Brandt P, Galipeau N, Lamoureux R, Su S, Yim A, Volpi C, Shields ALBlood, 2021;138(1):4654.View PublicationHematologyQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2021CheckMate 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 cancerVan 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 JAOral presentation at ASCO-GI. Journal of Clinical Oncology, 2021;39(supplement 3): 167-167.View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2020.12Budget impact of Ontruzant for the treatment of breast cancer and gastric cancer in the United StatesHuang M, Singhal P, Shinde R, Wilkes S, Nagda N, Yi Y, Lucherini SPoster presented at the San Antonio Breast Cancer Symposium (SABCS), December 2020View PublicationOncologyEconomic models
2020.12Health-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 LYPoster presented at American Epilepsy Society Annual meeting, December 2020CNS/Neurology, Pediatric carePsychometric evaluation and statistical analysis of COAs
2020.12Psychometric Evaluation of Three Patient-Reported Outcome Questionnaires Assessing the Symptoms and Impacts of Atopic Dermatitis in Adults and AdolescentsSilverberg JI, Simpson EL, Litcher-Kelly L, McDonald J, Calimlim BM, Leshem YAPoster presented at the Revolutionizing Atopic Dermatitis (Virtual Conference; 13-14 December 2020)View PublicationDermatology, Pediatric carePsychometric evaluation and statistical analysis of COAs
2020.12Content 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 DermatitisSilverberg JI, Simpson EL, McLafferty M, Su S, Medrano P, Calimlim BM, Paller ASPoster presented at the Revolutionizing Atopic Dermatitis (Virtual Conference; 13-14 December 2020)View PublicationDermatology, Pediatric careQualitative patient-centered research and evaluation of COAs
2020.11Estimating the economic and health impact of the PD-1/PD-L1 Inhibitor Class in BulgariaDimitrova M, Todorov S, Djambazov S, Slavchev G, Swales O, Hughes R, Nagda N, Lucherini SPoster presented during virtual ISPOR, November 2020. Value in Health vol. 23,2,S451View PublicationOncologyEconomic models, Evidence synthesis/utility generation
2020.11Estimating the economic and health impact of the PD-1/PD-L1 Inhibitor Class in FinlandLehto P, Suvanto T, Aro M, Normand R, Nagda N, Lucherini SPoster presented during virtual ISPOR, November 2020. Value in Health vol. 23,2,S458View PublicationOncologyEconomic models, Evidence synthesis/utility generation
2020.11Estimating the budget and health impact of the PD-1/PD-L1 Inhibitor Class in SwitzerlandGuggisberg P, Huwiler S, Urbinello D, Rachev B, Swales O, Nagda N, Lucherini SPoster presented during virtual ISPOR, November 2020. Value in Health vol. 23,2,S459View PublicationOncologyEconomic models, Evidence synthesis/utility generation
2020.11Evaluating the value of low-dose aspirin in patients at high risk of cardiovascular diseaseWithers K, Stainthorpe A, Anstee K, Detering E, Yeo SPoster presented at virtual ISPOR, November 2020. Value in Health vol. 23,2,S502View PublicationCardiovascularLiterature/landscape reviews, Evidence synthesis/utility generation
2020.11The use of healthcare resource utilization costs for treatment-resistant depression as evidence for decision-making in the Canadian healthcare systemZhang Q, O'Hara M, Zante D, Pone E, Fadeyi I, Hopwood N, Perry RPoster presentedt at the virtual CADTH Symposium, 2020CNS/NeurologyEvidence synthesis/utility generation
2020.11A Novel Approach to Assessing the Severity Ranges of Commonly Used Atopic Dermatitis Clinical Outcome AssessmentsSun X, Li X, Banderas B, Arenson E, Yip C, Milligan G, Derosa MPoster presentation at ISPOR, November 2020View PublicationDermatologyPsychometric evaluation and statistical analysis of COAs
2020.11Whose choice is it anyway? A multi-national and multi-stakeholder perspective on shared treatment decision making in older adults with acute myeloid leukaemiaRussell 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 DPoster presented at British Society for Hematology Conference, November 2020View PublicationOncologyQualitative patient-centered research and evaluation of COAs
2020.11Health State Utility Values By Time to Death in Recurrent or Metastatic Squamous-Cell Carcinoma of the Head and NeckNoon K, Trigg A, DeRosa M, Singh P, Bennett B, Taylor F, Cocks KPoster presented at ISPOR, November 2020. Value in Health, 2020;23(2): S474View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2020.11Quantitative Exploration to Characterize the Burden of END-STAGE Kidney Disease (ESKD) with DialysisBonner N, Litjens P, Mason B, Ewy G, Griffiths P, O'Hara LPoster presented at ISPOR, November 2020. Value in Health, 2020;23(Supp 2):S755View PublicationCNS/NeurologyPsychometric 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 illnessMarks 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 CPoster presented at American Society of Tropical Medicine and Hygiene Meeting, November 2020Infectious diseasesQualitative patient-centered research and evaluation of COAs
2020.11Qualitative Interviews to Explore Drivers and Behaviours Associated with Medication NON-Adherence across a Range of Diseases, Treatment Modalities, and CountriesMorgan L, Exall E, Bentley S, Rossom R, Roche N, Higgins V, Piercy J, Arbuckle R, Khunti KPodium presentation at ISPOR, November 2020. Value in Health, 2020;23(2):S399View PublicationQualitative patient-centered research and evaluation of COAs
2020.11Health State Utility Values By Time to Death in Recurrent or Metastatic Squamous-Cell Carcinoma of the Head and NeckNoon K, Trigg A, DeRosa M, Singh P, Bennett B, Taylor F, Cocks KPoster presented at ISPOR, November 2020. Value in Health, 2020;23(Supp 2):S474View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2020.11The Psychological, Emotional, Physical, Social, and Economic Burden of Caring for a CHILD with Respiratory Syncytial VIRUS (RSV): A Qualitative and Quantitative Literature ReviewRandhawa S, Wratten S, Abetz-Webb L, Arbuckle R, Scott JPoster presented at ISPOR, November 2020. Value in Health, 2020;23(Supp 2):S731View PublicationRespiratory diseases, Pediatric careLiterature and COA instrument reviews
2020.11Measuring the Intensity of Dengue Illness: Modification of an Existing Patient-Reported Outcome Measure (PRO) in Low and Middle Income CountriesWells 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 TPoster presented at ISPOR, November 2020. Value in Health, 2020;23(Supp 2):S571View PublicationInfectious diseases, Pediatric careQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2020.11Dimensional Structure of Dermatology Life Quality Index in Patients with Atopic Dermatitis: Bifactor Model ApproachSun X, Li X, Arenson E, Derosa M, Yip C, Milligan G, Banderas BPoster Presentation at ISPOR, November 2020. Value in Health, 2020;23(2): S676-S677.View PublicationDermatologyPsychometric evaluation and statistical analysis of COAs
2020.1Three-year analysis of healthcare utilization in patients with low-grade upper tract urothelial cancer (LG-UTUC) treated with ureteroscopic management or RNUThacker K, Smith G, Begum N, Kamgar F, Pilossoph L, Oliver L, Moore W, Misir S, Mikhelashvili TPoster presented at virtual AMCP Nexus conference, October 2020OncologyEvidence synthesis/utility generation
2020.1Targeted literature review (TLR) of the real-world treatment patterns and outcomes among mCRPC patients in EU5, Japan and AustraliaOliver L, Ghate S, Shui I, Gayle A, Wong O Y, Kim J, Payne S, Shore NPoster presented during PROSCA (Global congress on prostate cancer), October 2020OncologyLiterature/landscape reviews
2020.1Evaluation of patients with insufficient efficacy and/or tolerability to triptans for the acute treatment of migraine: A systematic literature reviewLeroux E, Buchanan A, Lombard L, Loo LS, Bridge D, Rousseau B, Hopwood N, Matthews B, Reuter UAdvances in Therapy, 37, 4765–4796 (October 2020)View PublicationCNS/NeurologyLiterature/landscape reviews
2020.1Why & how to use time-to-event endpoints for COAs & how can the estimand framework help?Lawrance RPresented at ISOQOL, October 2020Psychometric evaluation and statistical analysis of COAs
2020.1How 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 MSymposia at ISOQOL , October 2020Psychometric evaluation and statistical analysis of COAs
2020.1Making sense of sensors: Selecting, incorporating, and analyzing fit-for-purpose technologies for continuous data capture in clinical trialsModerator: 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 2020Medical devicesLiterature and COA instrument reviews
2020.1Patient 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-makingWells J, Vashi P, Gater APresented at ISOQOL, October 2020Rare diseasesQualitative exit and in-trial interviews
2020.1Qualitative exit interviews with study clinical investigators to explore trial and treatment experience and feasibility of use in general clinical practiceWilliamson N, Atkinson J, Bonner N, Arbuckle R, Tinsley K, Cooper C, Abraham LPresented at ISOQOL, October 2020Qualitative exit and in-trial interviews
2020.1Comparison of qualitative methods to explore key symptom and functional impact concepts of presbyopia: literature review, social media listening, and qualitative interviewsFindley A, Bentley S, Arbuckle R, Wolffsohn J, Naujoks C, Patalano F, sharma G, Kommineni J, Tyagi N, Chiva-Razavi SOral presentation at ISOQOL, October 2020OphthalmologyLiterature and COA instrument reviews
2020.1The Endometriosis Daily Diary: Modifying an Existing PRO for Endometriosis-Related PainGuan Y, Panter C, Wratten S, Randhawa S, Arbuckle R, Fauconnier A, Giudice L, Arbelaez F, Weaver J, Nguyen AMOral presentation at ISOQOL, October 2020Women's healthQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2020.1COVID-19: Facilitating a paradigm shift in patient disease experience researchWells J, Chandler D, Tatlock SPoster presented at ISOQOL, October 2020Infectious diseasesQualitative patient-centered research and evaluation of COAs
2020.1Qualitative 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) measuresWen-Hung C, Panter C, Park J, Mason B, Findley A, Arbuckle R, Svedsater H, Chauhan DPoster presented at ISOQOL, October 2020Musculoskeletal diseasesQualitative patient-centered research and evaluation of COAs
2020.1Novel 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 MOral Presentation at ISOQOL, October 2020NephrologyQualitative patient-centered research and evaluation of COAs
2020.09Literature review of patient-reported outcome measures in eating behaviour and evaluation for weight management trialsVon Huth Smith L, Galipeau N, Faerch L, Klooster B, Lopes S, Medrano P, Padilla B, Su S, Turner-Bowker DMPoster presented at European and International Congress on Obesity, 1-4 September 2020Endocrinology/Metabolic diseasesLiterature and COA instrument reviews
2020.08Estimating treatment effect on patient-reported outcomes subject to dropout: comparing traditional, contemporary and causal inference approachesTrigg A, Roydhouse JOral presentation at ISOQOL, August 2020CNS/NeurologyPsychometric evaluation and statistical analysis of COAs
2020.06Understanding the Economic Burden of Treating Low-Grade Upper Tract Urothelial Cancer in the United StatesThacker K, Raman J, McLean T, Said J, Oliver L, Gore JUrology Practice. 2020 Jun 9:10-97.View PublicationOncologyTreatment pathways/burden of illness
2020.06The value of improved survival in acute myeloid leukaemia: understanding how physicians, patients, and their family members define quality of lifeRussell 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 DPoster presented at European Hematology Association Meeting, June 2020View PublicationOncologyQualitative patient-centered research and evaluation of COAs
2020.06Assessing the patient experience of lupus nephritis: development of a conceptual model and review of existing patient-reported outcome (pro) measuresBerry P, Burrows K, Hall R, Gater A, Bradley H, Ward A, Tolley C, DeLong P, Hsia ECPoster presented at EULAR. June 2020. Annals of Rheumatic Diseases, 2020;79(Supp 1):1954-1955View PublicationImmunologyQualitative patient-centered research and evaluation of COAs, Literature and COA instrument reviews
2020.05Modelling the resource utilisation difference of using subcutaneous and intravenous administration of Rituximab within chemotherapy for the treatment of B-cell lymphomaHughes R, Swales O, Lucherini SValue in Health vol. 23,1,S35-S36, May 2020View PublicationOncologyEvidence synthesis/utility generation
2020.05Clinical trials landscape for digital health interventions: A descriptive analysisBraileanu G, Sa'id J, Higgins C, Rousseau BValue in Health vol. 23,1,S250, May 2020View PublicationCardiovascular, Endocrinology/Metabolic diseasesLiterature/landscape reviews
2020.05Targeted literature review (TLR) of the real-world treatment patterns and outcomes among MCRPC patients in the USShore N, Oliver L, Shui I, Gayle A, Wong O Y, Kim J, Payne S, Amin S, Ghate SValue in Health vol. 23,1,S23, May 2020View PublicationOncologyLiterature/landscape reviews
2020.05Understanding the economic burden of comorbidities associated with male hypogonadism: A cost model in EnglandSpencer C, Anstee K, Yeo S, Holl K, Wessinger-Grafenhahn UValue in Health vol. 23,1,S152, May 2020View PublicationMen's health, Urology/UrogenitalEconomic models, Treatment pathways/burden of illness
2020.05Time based vs cycle-based approaches to account for patient-reported outcome (PRO) assessments in onoclogy trialsLord-Bessen J, Pieters A, shaw J, DeRosa M, Taylor F, Lawrance R, Greenwood MPoster presented at ISPOR, May 2020. Value in Health, 2020;23(1):S79-S80View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2020.05Uncovering Hidden Symptoms in Women with EndometriosisGuan Y, Nguyen AM, Fauconnier A, Weaver J, Panter C, Wratten S, Randhawa S, Arbuckle R, Giudice L, Arbelaez FPoster presented at Society of Endometriosis and Uterine Disorder Congress, May 2020Women's healthQualitative patient-centered research and evaluation of COAs
2020.05A fork in the road: a mixed methods study exploring why older adults with acute myeloid leukemia choose different treatment pathsLeBlanc 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 DPoster presented at American Society of Clinical Oncology Meeting, May 2020View PublicationOncologyQualitative patient-centered research and evaluation of COAs
2020.05Can wearable sensor technology support a paradigm shift in paediatric rare disease research?Ollivier C, Griffiths P, Davies EHPoster presented at European Conference on Rare Diseases and Orphan Products, May 2020View PublicationPediatric care, Rare diseases, Medical devicesPsychometric evaluation and statistical analysis of COAs, Qualitative patient-centered research and evaluation of COAs
2020.05Exploring the patient experience of chronic cough and mucus in COPD using qualitative methodsKeeley T, Kaur S, Tal-Singer R, Stott-Miller M, Morgan L, Miller BE, Gater A, Hall RPoster presentation at American Thoracic Society International Conference, May 2020. American Journal of Respiratory and Critical Care Medicine, 2020;201:A5081View PublicationRespiratory diseasesQualitative patient-centered research and evaluation of COAs
2020.05Qualitative exploration of the patient experience of long-chain fatty acid oxidation disordersHall R, Kruger E, Bowden A, Cimms T, Skrinar A, Tinsley K, Gater APoster presented at ISPOR, May 2020. Value in Health, 2020;23(1):S342-S343View PublicationEndocrinology/Metabolic diseasesQualitative patient-centered research and evaluation of COAs
2020.05How are flares measured to evaluate treatment efficacy in rheumatic conditions? A review of FDA-approved drug labelsGalipeau N, Su S, Brova M, Severson K, Mazar I, Turner-Bowker, DMPoster presentation at ISPOR, May 2020. Value in Health, 2020;23(SUPPLEMENT 1): S226.View PublicationMusculoskeletal diseasesLiterature and COA instrument reviews
2020.05Health-related Quality of Life in Patients with Recurrent Pericarditis: Results from a Phase 2 Study of RilonaceptLin 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 JPoster presented at Quality of Care & Outcomes Research Scientific Sessions, Reston, VA, May 15-16, 2020View PublicationCardiovascularPsychometric evaluation and statistical analysis of COAs
2020.05Methodological advantages of SEM for responder definitionSun X, Li X.Poster presentation at ISPOR, May 2020. Value in Health, 2020;23(SUPPLEMENT 1): S251.View PublicationPsychometric evaluation and statistical analysis of COAs
2020.05In between two worlds: Patient experiences in the transition from adolescent to young adult healthcare services and implications for health outcomes assessmentTurner-Bowker DM, K Chatterton, Mossman B, Yaworsky A, Krohe MPoster presentation at ISPOR, May 2020. Value in Health, 2020;23(SUPPLEMENT 1): S255.View PublicationPediatric careLiterature and COA instrument reviews
2020.03Understanding the patient experience of severe, recurrent, bilateral nasal polyps: A qualitative interview study in the United States and GermanyHall R, Trennery C, Chan R, Gater A, Bradley H, Sikirica MV, Nelsen LMValue in Health, 23(5): 632-641View PublicationRespiratory diseasesQualitative patient-centered research and evaluation of COAs, Literature and COA instrument reviews
2020.02Review of the real-world prevalence of a range of prostate cancer (PC) types (mHSPC, nmCRPC, mCRPC), and gene alterations in prostate cancerShore N, Oliver L, Shui I, Gayle A, Wong O Y, Kim J, Payne S, Ghate SPresented at ASCO GU (Genitourinary) Cancers Symposium, February 2020. Journal of Clinical Oncology 2020 38:6_suppl, 229-229.View PublicationOncologyLiterature/landscape reviews
2020.02International standards for the analysis of quality-of-life and patient-reported outcome endpoints in cancer randomised controlled trials: recommendations of the SISAQOL ConsortiumCoens C, Pe M, Dueck AC, Sloan J, Basch E, Calvert M, Campbell A, Cleeland C, Cocks K, Collette L, Devlin NThe Lancet Oncology; 21(2):e83-96View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2020.02Fabry 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 NPoster presentation at Annual WORLDSymposium, Orlando, FL, 10-13 February 2020Genetic diseases, CNS/NeurologyQualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Literature and COA instrument reviews
2020.01CheckMate 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 carcinomaEdeline 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 BPoster presented at Gastrointestinal Cancers Symposium, San Francisco, CA, 23-25 January 2020 OncologyPsychometric evaluation and statistical analysis of COAs
2020Efficacy and safety of biologics in psoriatic arthritis: A systematic literature review and network meta-analysisRuyssen-Witrand A, Perry R, Watkins C, Braileanu G, Kumar G, Kiri S, Nott D, Liu-Leage S, Hartz S, Sapin CRMD Open 2020;6:e001117. doi: 10.1136/rmdopen-2019-001117View PublicationMusculoskeletal diseases, ImmunologyLiterature/landscape reviews, Evidence synthesis/utility generation
2020Treatment options for dementia with lewy bodies: A network meta-analysis of randomised control trialsTahami Monfared A, Desai M, Hughes R, Lucherini S, Yi Y, Perry RNeurol Ther, 9, 521–534 (2020)View PublicationCNS/NeurologyEvidence synthesis/utility generation
2020What matters most? Different stakeholder perspectives on estimands for an invented case study in COPDKeene ON, Ruberg S, Schacht A, Akacha M, Lawrance R, Berglind A, Wright DPharmaceutical Studies, 2020;19(4):370-387View PublicationRespiratory diseasesPsychometric evaluation and statistical analysis of COAs
2020What 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 KJournal of Patient Reported Outcomes, 2020;4:68, https://doi.org/10.1186/s41687-020-00218-5View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2020Minimally important differences for interpreting the EORTC QLQ-C30 in advanced colorectal cancer patients treated with chemotherapyMusoro JZ, Samantha SC, Coens C, Pochesci A, Terada M, King MT, Sprangers MAG, Groenvold M, Cocks K, Velikova G, Flechtner HH, Bottomley AColorectal Cancer, 2020;22(12):2278-2287View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2020A novel, integrative approach for evaluating progression in Multiple Sclerosis: Development of a scoring algorithmTolley C, Piani-Meier D, Bentley S, Bennett B, Jones E, Pike J, Dahlke F, Tomic D, Ziemssen TJournal of Medical Internet Research, 2020,8(4):e17592View PublicationCNS/NeurologyPsychometric evaluation and statistical analysis of COAs, Qualitative patient-centered research and evaluation of COAs
2020A Physician-Completed Digital Tool for Evaluating Disease Progression (Multiple Sclerosis Progression Discussion Tool): Validation StudyZiemssen T, Piani-Meier D, Bennett B, Johnson C, Tinsley K, Trigg A, Hach T, Dahlke F, Tomic D, Tolley C, Freedman MSJournal of Medical Internet Research, 2020;22(9):e16932View PublicationCNS/NeurologyPsychometric evaluation and statistical analysis of COAs
2020A mixed methods approach towards understanding key disease characteristics associated with the progression from RRMS to SPMS: Physicians' and patients' viewsZiemssen T, Tolley C, Bennett B, Kilgariff S, Jones E, Pike J, Tomic D, Piani-Meier D, Lahoz RMultiple Sclerosis and Related Disorders, 2020;38:101861View PublicationCNS/NeurologyQualitative patient-centered research and evaluation of COAs, Psychometric evaluation and statistical analysis of COAs, COA instrument development or modification
2020Estimating EQ-5D Utilities for Cost-effectiveness Models Involving Immuno-oncology TreatmentsChaudhary MA, Sun X, Yuan Y, Varol N, Penrod JRValue in Health, 2020;23(SUPPLEMENT 2): S438.View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2020Exploring and leveraging known resources to support pediatric clinical outcomes assessment (PedCOA) developmentKrohe M, Lamoureux R, Banderas C, Turner-Bowker DMCurr Pediatr Rev, 2020;16(3):232-240.View PublicationPediatric careCOA instrument development or modification
2020Characterizing the use of clinical outcome assessments in approved gene therapy treatmentsOllis S, Dickie G, Volpi C, Turner-Bowker DMValue in Health, 2020;23(SUPPLEMENT 1): S20.View PublicationGenetic diseasesLiterature and COA instrument reviews
2020How to ignite the estimand discussion and apply the “estimand” language to PROs in clinical trialsLawrance R, Degtyarev E, Rufibach KValue in Health, 2020;23(2): S616.Psychometric evaluation and statistical analysis of COAs
2020Development and Content Validation of Pruritus and Symptoms Assessment for Atopic Dermatitis (PSAAD) in Adolescents and Adults with Moderate-to-Severe ADHall 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 LDermatology and Therapy, 2020;11:221-233View PublicationDermatology, Pediatric careQualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs
2020Short bowel syndrome and the impact on patients and their families: a qualitative studySowerbutts AM, Panter C, Dickie G, Bennett B, Ablett J, Burden S, Lal SJournal of Human Nutrition and Dietetics, 2020;33(6):767-774View PublicationRare diseases, GastroenterologyQualitative patient-centered research and evaluation of COAs
2020Patients’ experiences of Parkinson’s disease: a qualitative study in glucocerebrosidase and idiopathic Parkinson’s diseaseBonner N, Bozzi S, Morgan L, Peterschmitt MJ, Fischer TZ, Arbuckle R, Reaney MThe Journal of Patient Reported Outcomes, 2020;4:65View PublicationCNS/NeurologyQualitative patient-centered research and evaluation of COAs
2020Qualitative 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 AAdvances in Therapy, 2020;37:2884-2901View PublicationOphthalmologyQualitative patient-centered research and evaluation of COAs
2020Minimally 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 cancerMusoro 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 AHead and Neck, 2020;42(11):3141-3152View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2020Longitudinal health-related quality of life in first-line treated patients with chronic lymphocytic leukemia: results from the Connect® CLL RegistrySharman 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 AejHaem, 2020,1(1):188-198View PublicationHematologyPsychometric evaluation and statistical analysis of COAs
2020Social Media Listening to Understand the Lived Experience of Presbyopia: Systematic Search and Content Analysis StudyWolffsohn JS, Leteneux-Pantais C, Chiva-Razavi S, Bentley S, Johnson C, Findley A, Tolley C, Arbuckle R, Kommineni J, Tyagi NJournal of Medical Internet Research, 2020;22(9):e18306View PublicationOphthalmologyLiterature and COA instrument reviews
2020Development of a Patient-Reported Outcome Questionnaire to Evaluate Primary Mitochondrial Myopathy Symptoms: The Primary Mitochondrial MyopathyGwaltney C, Stokes J, Aiudi A, Mazar I, Ollis S, Love E, Espensen A, Shields ALJ Clin Neuromuscul Dis, 2020;22(2): 65-76.View PublicationGenetic diseases, Rare diseases, Musculoskeletal diseasesQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2020Comparison 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 NPoster 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 PublicationGastroenterology, ImmunologyPsychometric evaluation and statistical analysis of COAs
2020A Dictionary-Based Text Mining Approach for Identifying Patient-centric Symptoms from Patient Interviews.Li X, DeRosa M, Padilla B, Banderas B, Duluc LOral presentation at ISOQOL, 2020Qualitative patient-centered research and evaluation of COAs
2020Factors driving patient preferences for growth hormone deficiency (GHD) injection regimen and injection device features: A discrete choice exerciseMcNamara M, Turner-Bowker DM, Westhead H, Yaworsky A, Palladino A, Gross H, Pleil A, Loftus JPatient Prefer Adherence, 2020; 14: 781–793.View PublicationEndocrinology/Metabolic diseasesPatient preference research
2020First-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 KPoster presented at European Lung Cancer Congress, Geneva, Switzerland, April 15-18 2020.OncologyPsychometric evaluation and statistical analysis of COAs
2020Psychometric 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 FPoster presentation at ISOQOL, 2020Rare diseasesPsychometric evaluation and statistical analysis of COAs
2020Development and content validation of the Pediatric Oral Medicines Acceptability Questionnaires (P-OMAQ): patient-reported and caregiver-reported outcome measuresTurner-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 PublicationPediatric careQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2020Development and psychometric evaluation of the Life Interference Questionnaire for Growth Hormone Deficiency (LIQ-GHD) to assess growth hormone injection burden in children and adultsTurner-Bowker DM, Yaworsky A, Palladino A, Lamoureux RE, Kelly M, Love E, Pleil A, Shields A, Loftus JThe Patient - Patient-Centered Outcomes Research, 2020;13: 289–306.View PublicationEndocrinology/Metabolic diseases, Pediatric carePsychometric evaluation and statistical analysis of COAs, Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs
2019.12Treatment decision making in AML: Factors of importance to clinicians, AML patients and their familyLeBlanc 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 DPoster presented at American Society of Hematology Annual Meeting, December 2019. Blood, 2019;134(Supp 1)3498View PublicationOncologyQualitative patient-centered research and evaluation of COAs
2019.12The Psychometric Properties of the ITP Life Quality Index Assessed in a Large Multinational “Real-World” Cohort of Immune Thrombocytopaenia PatientsViana R, D'Alessio D, Griffiths P, Bonner N, Grant LOral presentation at American Society of Hematology Annual Meeting, December 2019. Blood, 2019;134(Supp 1):386View PublicationHematologyPsychometric evaluation and statistical analysis of COAs
2019.12Health-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 CPresented at 61st ASH Annual Meeting and Exposition, Orland, FL, December 7-10, 2019. Blood, 2019;134(Supplement 1): 2192.View PublicationOncologyQualitative patient-centered research and evaluation of COAs
2019.11Understanding the pricing and reimbursement (P&R) landscape of orphan drugs in emerging marketsOliver L, Karakusevic A, Enstone A, Rousseau BPoster presented at ISPOR, November 2019. Value in Health vol. 22,3,S860-861View PublicationRare diseasesLiterature/landscape reviews
2019.11Social media and vaccine hesitancy: Focus on MMRFarrington E, Lavelle PPoster presented at ISPOR, November 2019. Value in Health vol. 22,3,S661View PublicationInfectious diseases, VaccinesLiterature/landscape reviews
2019.11Understanding the humanistic burden and patient impact in non-alcoholic steatohepatitis (NASH)Oliver L, Tavella F, Rousseau BPoster presented at ISPOR, November 2019. Value in Health vol. 22,3,S590-591View PublicationHepatologyTreatment pathways/burden of illness
2019.11Evaluating the economic and humanistic burden of type 2 diabetes mellitus in emerging markets compared to established marketsAnstee K, Oldham D, Landels H, Rousseau BPoster presented at ISPOR, November 2019. Value in Health vol. 22,3,S574View PublicationEndocrinology/Metabolic diseasesLiterature/landscape reviews
2019.11Targeted literature review into methods of determining patients' preference for treatment type in diabetesCollings H, Wyn R, Tavella FPoster presented at ISPOR, November 2019. Value in Health vol. 22,3,S591View PublicationEndocrinology/Metabolic diseasesLiterature/landscape reviews
2019.11Exploring 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 JPoster presented at ISPOR, November 2019. Value in Health vol. 22,3,S490View PublicationOncologyHTA/reimbursement
2019.11Interregional inequality in Italian healthcare delivery affects choice of selective estrogen receptor modulators (SERMS) for the treatment of hormone-receptor-positive breast cancerWellam H, Pepper K, Silvey M, Rider A, Piercy JPoster presented at ISPOR, November 2019. Value in Health vol. 22,3,S489View PublicationOncologyLiterature/landscape reviews
2019.11Use of cost-effectiveness affordability curves in evaluating cancer drugs in EnglandYi Y, Lucherini SPoster presented at ISPOR, November 2019. Value in Health vol. 22,3,S462View PublicationOncologyEconomic models
2019.11Incorporating the patients' perspective in economic evaluations of healthcareJamadar F, Yi Y, Lucherini S, Heron LPoster presented at ISPOR, November 2019. Value in Health vol. 22,3,S772View PublicationLiterature/landscape reviews, Evidence synthesis/utility generation, Access/HEOR consultancy
2019.11Evaluation of the impact of alternative drug pricing strategies used on the budget impact and cost-effectiveness for products with multiple indicationsSmyrnaios C, Hughes R, Yi Y, Lucherini SPoster presented at ISPOR, November 2019. Value in Health vol. 22,3,S771-772View PublicationEconomic models
2019.11An economic evaluation of the hospital resourcing implications for the treatment of adverse eventsHughes R, Hernani M, Lucherini S, Heron LPoster presented at ISPOR, November 2019. Value in Health vol. 22,3,S770View PublicationOncologyEconomic models
2019.11Systematic literature review of intravenously administered oncology therapies for which a subcutaneous formulation has also been developedSchenkel B, Wu E, McBride A, Hernani M, Wyn R, Kornalska KPoster presented at the Society for Immunotherapy of Cancer (SITC) meeting, November 2019OncologyLiterature/landscape reviews
2019.11Development 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 StudiesGater A, Reaney M, Findley A, Brun-Strang C, Burrows K, Nguyen-Pascal M-L, Roborel de Climens ADrug Safety; 43: 119-134View PublicationEndocrinology/Metabolic diseasesQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2019.11Psychometric 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 mutationsViriato D, Spera C, Williamson N, Tolley C, Arbuckle R, Bennett JPoster presented at ISPOR, November 2019. Value in Health, 2019;22(Supp 3):S869View PublicationOphthalmologyPsychometric evaluation and statistical analysis of COAs
2019.11What do we know about patients' and caregivers' experience when living with the hereditary retinal condition retinitis pigmentosaBanhazi J, Williamson N, Bradley H, Exall E, Naujoks C, Spera C, Green J, Fischer MD, Audo I, Kay C, Viriato DPoster presented at ISPOR, November 2019. Value in Health, 2019;22(Supp 3):S865View PublicationOphthalmology, Pediatric careQualitative patient-centered research and evaluation of COAs
2019.11Methods and considerations for the development, content validity testing, and evaluation of patient education tools (PETS)Bentley S, Johnson C, Exall E, Lawrance R, Brohan EPoster presented at ISPOR, November 2019. Value in Health, 2019;22(Supp 3):S827View PublicationQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2019.11Illness-related stigma: conceptual and measurement considerations for patient centered assessment in interventional contextsBrohan E, Chan EKHPoster presented at ISPOR, November 2019. Value in Health, 2019;22(Supp 3):S730View PublicationInfectious diseasesLiterature and COA instrument reviews
2019.11Indirect 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 LPoster presented at ISPOR, November 2019. Value in Health, 2019;22(Supp 3):S444-S445View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2019.11Understanding the role of anchor correlations in the calculation of meaningful change thresholds for health-related quality of life researchGriffiths P, Williams A, Brohan E, Ccocks KPoster presented at ISPOR, November 2019. Value in Health, 2019;22(Supp 3):S826View PublicationPsychometric evaluation and statistical analysis of COAs
2019.11Comparison of generic and condition-specific preference measures to derive health utilities: a retrospective analysis of nivolumab trials in solid tumoursShaw JW, Bennett B, DeRosa M, Taylor F, Kiff C, Ntais D, Noon K, King MT, Cocks KOral Presentation at ISPOR, November 2019. Value in Health, 2019;22(Supp 3):S922View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2019.11The SISAQOL initiative: establishing international standards and recommendations for the analysis of patient-reported outcomes and quality of life data in oncology randomized clinical trialsDorme 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 APoster presented at ISPOR, November 2019. Value in Health, 2019;22(Supp 3):S525View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2019.11Qualitative 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 MPoster presented at ISPOR, November 2019. Value in Health, 2019;22(Supp 3):S759View PublicationCNS/NeurologyQualitative patient-centered research and evaluation of COAs
2019.11Confirmatory 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 APoster presented at ISPOR, November 2019. Value in Health, 2019;22(Supp 3):S870View PublicationGenetic diseases, HematologyPsychometric evaluation and statistical analysis of COAs
2019.11Psychometric performance of plaque psoriasis patient reported outcome numeric rating scales in a Phase 2b clinical trialBanderas B, Lizzul P, Ahluwalia G, Liu C, Kinchev P, Stroehmann D, Li S, Galipeau N, Mossman B, McDonald J, Shields APoster presented at ISPOR, November 2019. Value in Health, 2019;22(SUPPLEMENT 3): S911.View PublicationDermatologyPsychometric evaluation and statistical analysis of COAs
2019.11Factors influencing agreement between patient and clinician assessments of severity in chronic plaque psoriasisDeRosa M, Yip C, Banderas B, Foley CPoster presented at ISPOR, November 2019. Value in Health, 2019;22(SUPPLEMENT 3): S890.View PublicationDermatologyPsychometric evaluation and statistical analysis of COAs
2019.11Using 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 LPoster presented at International Ataxia Research Conference, Washington DC, November 13-19, 2019Genetic diseases, Rare diseases, CNS/NeurologyQualitative patient-centered research and evaluation of COAs
2019.11Predictors of agreement between patient and clinician global assessments of rheumatoid arthritis severityFoley C, Yip C, Banderas B, DeRosa MPoster presented at ISPOR, November 2019. Value in Health, 2019;22(SUPPLEMENT 3): S706.View PublicationMusculoskeletal diseases, ImmunologyPsychometric evaluation and statistical analysis of COAs
2019.11Is there a systematic methodology for choosing trial endpoints that incorporates patients’ perspectives? What might it look like? Shields AL, Powers JH, Stone AAWorkshop presented at ISPOR, November 2019.Literature and COA instrument reviews
2019.11Psychometric performance of the Indolent Systemic Mastocytosis Symptom Assessment Form (ISM-SAF)Shields AL, Taylor F, Lamoureux R, Padilla B, Severson K, Green T, Mar BPoster presented at ISPOR, November 2019. Value in Health, 2019;22(SUPPLEMENT 3)S867-S868.View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2019.11Psychometric Evaluation of the Advanced Systemic Mastocytosis Symptom Assessment Form (AdvSM-SAF) in patients with Advanced Systemic MastocytosisTaylor 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 BPoster presented at ISPOR, November 2019. Value in Health, 2019;22(SUPPLEMENT 3): S868.View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2019.11Patient characteristics associated with greater hidradenitis suppurativa severity agreement between patient and clinician global assessmentsYip C, Banderas B, DeRosa M, Foley C.Poster presented at ISPOR, November 2019. Value in Health, 2019;22(SUPPLEMENT 3): S866.View PublicationDermatologyPsychometric evaluation and statistical analysis of COAs
2019.1A qualitative literature and instrument review and qualitative interviews with adult chronic hand eczema (CHE) patients and expert dermatologistsGrant L, Seiding Larsen L, Burrows K, Belsito DV, Weisshaar E, Diepgen T, Hahn-Pedersen J, Sørensen OE, Arbuckle RPoster presented at European Academy of Dermatology and Venereology Conference, October 2019DermatologyLiterature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs
2019.1The patient experience of chronic hand eczema: a conceptual modelBurrows K, Larsen LS, Grant L, Besito DV, Weisshar E, Diepgen T, Hahn-Pedersen J, Sorensen OE, Arbuckle RPoster presented at 28th Congress of the European Academy of Dermatology and Venereology, October 2019DermatologyQualitative patient-centered research and evaluation of COAs
2019.1Symposium 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 trialsDe Climens AR, Burrows K, Findley A, Gater ASymposia presented at ISOQOL, October 2019Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2019.1Symposium 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 evaluationGater A, Tatlock S, Arbuckle RSymposia presented at ISOQOL, October 2019Qualitative patient-centered research and evaluation of COAs
2019.1Symposium 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 studiesManson S, Bonner N, Gater ASymposia presented at ISOQOL, October 2019Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2019.1Symposium 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 studiesPanter C, Arbuckle R, Tatlock SSymposia presented at ISOQOL, October 2019Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2019.1Considering adolescents as a unique age group: implications for the development, validation and implementation of patient-reported outcomes (PROs) in adolescentsPanter C, Trennery C, Burrows K, Mason B, Ward A, Arbuckle RPoster presented at ISOQOL, October 2019Pediatric careLiterature and COA instrument reviews
2019.1Symposium 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 strategiesTurner-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 JSymposia presented at ISOQOL, October 2019Pediatric careLiterature and COA instrument reviews
2019.1Symposium 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 areasVon Maltzahn R, Bonner N, Williamson N, Gater A, NelsenSymposia presented at ISOQOL October 2019Qualitative exit and in-trial interviews
2019.1A Mixed Methods Approach to Generate Meaningful Change Estimates EORTC QLQ-MY20Yucel E, Sully K, Trigg A, Bonner N, Shah N, Panjabi S, Cocks KPoster presented at ISOQOL, October 2019OncologyQualitative patient-centered research and evaluation of COAs, Psychometric evaluation and statistical analysis of COAs
2019.1Agreement of Daily and Weekly Mean Scores in a Chronic Plaque Psoriasis Population in a Phase 2 Clinical TrialBanderas B, Lizzul P, Mcdonald J, Galipeau N, Mossman B, Li S, Ahluwalia G, Kinchev P, Liu C, Stroehmann D, Shields APoster presented at ISOQOL, October 2019DermatologyPsychometric evaluation and statistical analysis of COAs
2019.1Establishing clinical meaningfulness of the 9-Hole Peg Test in the measurement of upper limb impairment in individuals with Friedreich’s Ataxia: A qualitative interview studyFarmer J, Sen R, Hoffman D, Shah A, Mazar I, Wang H, Banderas B, Kelly M, Mossman B, Brova M, Corben LPoster presented at ISOQOL, October 2019Genetic diseases, Rare diseases, CNS/NeurologyQualitative patient-centered research and evaluation of COAs
2019.1Development 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 HSPoster 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 PublicationGastroenterologyQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2019.09Using PROs in clinical trials: what I know about "estimands"?Lawrance R, Griffiths P, Degtyarev E, Rufibach K, Cocks KOral Presentation at ISOQOL, September 2019Psychometric evaluation and statistical analysis of COAs
2019.09What a difference a day makes: Assessing the impact of Daily Diary completion thresholds on psychometric properties and treatment effectsGriffiths P, Gater A, Brohan E, Cocks KPoster presented at ISOQOL, September 2019Psychometric evaluation and statistical analysis of COAs
2019.09Methods, value and application of Dephi panels in rare disease populations: a case study overviewWilliamson N, Grimes R, Bonner NPoster presented at ISOQOL, September 2019Rare diseasesQualitative patient-centered research and evaluation of COAs
2019.09Evaluation of content validity of the Near Activity Visual Questionnaire-Presbyopia (NAVQ-P) in presbyopia subjectsKilgariff S, Naujoks C, Johnson C, Patalano F, Findley A, Tolley C, Arbuckle R, Wolffsohn JS, Sharma G, Chiva-Razavi SPoster presented at ISOQOL, September 2019OphthalmologyQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2019.09Moving the interpretation of PRO scores forward: MIDs etcl!Cocks K, Devji T, Terluin B, Norman GSymposium presented at ISOQOL, September 2019Psychometric evaluation and statistical analysis of COAs
2019.09Establishing anchor-based minimally important differences (MID) for the EORTC QLQ-C30 scales across multiple cancer sitesMusoro 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 GroupsPoster presented at ISOQOL, September 2019OncologyPsychometric evaluation and statistical analysis of COAs
2019.09Testing the validity of the Canine Dermatitis Quality of Life and Treatment Satisfaction Questionnaire (CDQOL-TSQ) through correlations with other measuresNoli C, Wright A, Wells JR, Griffiths P, Brohan EOral presentation at European Veterinary Dermatology Conference, September 2019Animal health, DermatologyCOA instrument development or modification
2019.09Is 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 EPoster presented at European Veterinary Dermatology Conference, September 2019Animal health, DermatologyPsychometric evaluation and statistical analysis of COAs
2019.08Patient-centered insights on treatment decision-making and living with acute myeloid leukemia and other hematologic cancerCrawford R, Sully K, Rushton R, Johnson C, Doward L, Bell T, Welch V, Peloquin F, Gater AThe Patient; 13:83-102View PublicationOncologyLiterature and COA instrument reviews
2019.06Budget projections and health impact of the PD-1/PD-L1 inhibitors to inform budget planning – the experience from four European countriesRoediger A, van Bavel J, Pellissier J, Lucherini S, Davies N, Okhuoya P, Rachev BPoster presented at HTAi, June 2019OncologyEconomic models, Evidence synthesis/utility generation
2019.06Towards 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 APresentation at PSI, June 2019OncologyPsychometric evaluation and statistical analysis of COAs
2019.06Use of web-based surveys for the administration of patient-reported outcome measures (PROMs)Panter C, Bradley H, Tinsley KRapid Review at PROMs, June 2019Qualitative patient-centered research and evaluation of COAs
2019.06Using statistical study design concepts in the evaluation of patient education tools Johnson C, Kilgariff S, Exall E, Brohan E, Lawrance, RPoster presented at PROMs, June 2019Psychometric evaluation and statistical analysis of COAs
2019.06Patient-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 FSOral presentation at 9th European Post-Chicago Melanoma/Skin Cancer Meeting, June 2019. Journal of Clinical Oncology; 2019;37(15):9551View PublicationDermatology, OncologyQualitative patient-centered research and evaluation of COAs, Psychometric evaluation and statistical analysis of COAs
2019.06Qualitative 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 modelTrundell 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 KPoster presented at 23rd Cure SMA Research Meeting, June 2019Rare diseases, Genetic diseases, Musculoskeletal diseasesQualitative patient-centered research and evaluation of COAs
2019.06Concept elicitation interviews to understand the visual function symptoms and functional impacts of presbyopiaWolffsohn JS, Findley A, Patalano F, Naujoks C, Sharma G, Arbuckle R, Bentley S, Barnes E, Chiva-Razavi CePoster presented at World Ophthalmology Congress, June 2019OphthalmologyQualitative patient-centered research and evaluation of COAs
2019.06The lived experience of nasal polyps - the current understanding of the patients' perspectiveHall R, Trennery C, Gater A, Bradley H, Sikirica M, Nelsen LM, Evitt LAPoster presented at EAACI 2019, June 2019Respiratory diseasesQualitative patient-centered research and evaluation of COAs
2019.06Novel patient centric approach to understand the patient experience of nasal polypsHall R, Trennery C, Gater A, Bradley H, Sikirica M, Nelsen LM, Evitt LAPoster presented at EAACI 2019, June 2019Respiratory diseasesQualitative patient-centered research and evaluation of COAs
2019.06Development 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 RPoster presented at Parent Project Muscular Dystrophy, June 2019Musculoskeletal diseasesQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2019.06EPO3219: Validation of the scoring algorithm for a novel integrative MS progression discussion toolZiemssen T, Piani-Meier D, Bennett B, Johnson C, Tinsley K, Trigg A, Dahlke F, Tomic D, Tolley C, Freedman MPoster presented at European Academy of Neurology, June 2019. Neurology, 2019;92(15):P3.2-011View PublicationCNS/NeurologyPsychometric evaluation and statistical analysis of COAs
2019.06A strategy for the measurement of sickle cell disease symptoms from the patientOjo F, Litcher-Kelly L, Mazar I, Klooster B, Roeder A, Chaston E, Ollis S, Treadwell M, Reasner DPoster presented at 24th Congress of the European Hematology Association, Amsterdam, Netherlands, June 13-16 2019. Blood, 2019;132(Supplement 1): 3571.View PublicationHematology, Genetic diseasesQualitative patient-centered research and evaluation of COAs, Literature and COA instrument reviews
2019.06Perspectives of clinicians on the symptom experiences of patients: Are we getting it right? Roeder A, Love E, Mazar I, Turner-Bowker D, Severson KPoster presented at RARE Drug Development Symposium, Philadelphia, PA, June 6-7, 2019Qualitative patient-centered research and evaluation of COAs
2019.05Do current treatments target the high-burden fibrosis population in non-alcoholic steatohepatitis (NASH)?Oliver L, Jiandani N, Povsic M, Tavella F, Rousseau BPoster presented at ISPOR, May 2019. Value in Health vol. 22,2,S178View PublicationHepatologyTreatment pathways/burden of illness
2019.05Policies to improve AMR practices: An industry and HCP perspectiveKarakusevic A, Collings H, Tavella F, Rousseau BPoster presented at ISPOR, May 2019. Value in Health vol. 22,2,S308View PublicationInfectious diseasesLiterature/landscape reviews, Evidence synthesis/utility generation
2019.05Proposed modelling framework to assess the value of a treatment's safety profileHughes R, Yi YPoster presented at ISPOR, May 2019. Value in Health vol. 22,2,S317View PublicationEconomic models
2019.05How to capture the impact of selection biases in clinical practice on the average efficacy of treatmentHughes R, Lucherini S, Willke RPoster presented at ISPOR, May 2019. Value in Health vol. 22,2,S320-321View PublicationEconomic models, Evidence synthesis/utility generation
2019.05Economic evaluations of subcutaneously administered oncology therapies: A health technology assessment (HTA) landscape reviewWu E, Schenkel B, Povsic M, Wyn R, Hernani M, Kornalska KPoster presented at ISPOR, May 2019. Value in Health vol. 22,2,S77View PublicationOncologyLiterature/landscape reviews, HTA/reimbursement
2019.05Defining and demonstrating a child-caregiver dyad questionnaire administration approach to the assessment of pediatric health-related quality of lifeTurner-Bowker DM, Yaworsky A, Lamoureux R, Kelly M, Palladino A, Love E, Loftus JPoster presentation at ISPOR, May 2019. Value in Health, 2019;22(SUPPLEMENT 2): S35.View PublicationPediatric careLiterature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs
2019.05Development of Patient-Reported Outcome (PRO) and observer-reported outcome (OBSRO) measures for assessment of symptom intensity in dengue illnessSaretsky 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 CPoster presented at ISPOR, May 2019. Value in Health, 2019;22(Supp 2):S210View PublicationInfectious diseases, Pediatric careQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2019.05Linguistic validation of the Canine Dermatitis Quality of Life and Treatment Satisfaction Questionnaire (CDQoL-TSQ) for use in Thailand and ItalyWright A, Wells J, Brohan EPoster presented at ISPOR, May 2019. Value in Health, 2019;22(Supp 2):S387View PublicationAnimal health, DermatologyCOA instrument development or modification, Qualitative patient-centered research and evaluation of COAs
2019.05Assessing 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 approachesWu Y, Brohan E, Sully K, Maamari RPoster presented at ECE 2019, May 2019. Endocrine Abstracts, 2019;63:P732View PublicationEndocrinology/Metabolic diseasesPsychometric evaluation and statistical analysis of COAs
2019.05Qualitative assessment of the content validity of the SNOT-22 in patients with nasal polypsHall R, Trennery C, Bradley H, Gater A, Sikirica MV, Nelsen LM, Evitt LPoster presented at ISPOR, May 2019. Value in Health, 2019;22(Supp 2):S360View PublicationRespiratory diseasesQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2019.05The development and implementation of mobile applications for the collection of patient experience dataTrennery C, Wells J, Hall R, Panter C, Arbuckle R, Gater APoster presented at ISPOR, May 2019. Value in Health, 2019;22( Supp 2):S267View PublicationQualitative patient-centered research and evaluation of COAs
2019.05Animal Health - The New Kid on the Block? Development and psychometric evaluation of outcome measures in animal health and next stepsBrohan ESymposium presented at ISPOR, May 2019Animal healthPsychometric evaluation and statistical analysis of COAs
2019.05Health 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) trialLawrance R, DeRosa M, Taylor F, Penrod JR, Shaw JW, Wang FPoster presented at ISPOR, May 2019. Value in Health, 2019;22(Supp 2):S79View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2019.05Patient-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 dataSchadendorf 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 FSPoster presented at ASCO Annual Meeting, May 2019View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2019.05Quality 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 MRPoster presented at ASCO Annual Meeting, May 2019. Journal of Clinical Oncology, 2019;37(15):9568View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2019.05Psychometric evaluation and score interpretation of the NCCN-FACT Ovarian Symptom Index-18 in patients with advanced ovarian cancer: Real-world evidenceTrigg A, Kelly M, Iadeluca L, Chang J, Moreno-Koehler A, Yaworsky A, Krohe M, Rider A, Cappelleri JC, Cella D, Cocks KPoster presented at ISPOR, May 2019. Value in Health, 2019;22(Supp 2):S110View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2019.05Validation 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 SMPoster presented at American Academy of Neurology, May 2019. Neurology, 2019;92(15):P3.2-011View PublicationCNS/NeurologyPsychometric evaluation and statistical analysis of COAs
2019.05Most bothersome symptom measurement strategies: Considerations for regulated clinical trialsMazar I, Ollis S, Li S, Yaworsky A, Gwaltney CPoster presented at ISPOR, May 2019. Value in Health, 2019;22(SUPPLEMENT 2): S267.View PublicationLiterature and COA instrument reviews
2019.05Clinician input for the development of patient-reported outcomes: How many interviews are enough?Mossman B, Mazar I, Klooster B, Severson K, Foley CPoster presented at ISPOR, May 2019. Value in Health, 2019;22(SUPPLEMENT 2): S364.View PublicationDermatologyQualitative patient-centered research and evaluation of COAs
2019.05Development 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 KCPoster presented at ISPOR, May 2019. Value in Health, 2019;22(SUPPLEMENT 2): S183.View PublicationImmunologyLiterature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2019.05Novel measurement strategies for collection of clinical outcome assessments (COAs) in a pediatric populationTurner-Bowker DM, Krohe M, Yaworsky A, Kelly M, Padilla B, Chaston E, Radin A, Mastey V, Nadeau KC, Jalbert JJPoster presentation at ISPOR, May 2019. Value in Health, 2019;22(SUPPLEMENT 2): S183-S184.View PublicationPediatric careCOA instrument development or modification
2019.04Elicitation of health state utility values in phenylketonuria from a modified Delphi panelBilder D, Lewis M, Bausell H, Jain M, van Backle J, Jha A, Thomas JPoster presented at the Society for Inherited Metabolic Disorders (SIMD) congress, April 2019Endocrinology/Metabolic diseases, Genetic diseases, Rare diseasesEvidence synthesis/utility generation
2019.03Qualitative patient research to support the development of a conceptual model to illustrate the experience of atopic dermatitis in adolescentsTrennery C, Larsen LS, Grant L, Silverberg J, Abramovits W, Simpson E, Stalder JF, Hahn-Pedersen CJ, Kragh N, Bang B, Arbuckle APoster presented at American Academy of Dermatology, March 2019Dermatology, Pediatric careQualitative patient-centered research and evaluation of COAs
2019.01Multi-comparator ICER: A new framework for cost-effectiveness analysisLucherini S, Hughes R, Okhuoya PPublished online by Cambridge University Press, January 2019View PublicationEconomic models
2019Cost-effectiveness analysis of a HMGA2 prognostic test for acute myeloid leukaemia in a Canadian settingTremblay G, Rousseau B, Marquis M, Beaubois C, Sauvageau G, Hébert JApplied Health Economics and Health Policy, vol. 17, 827–839 (2019)View PublicationOncologyEconomic models
2019A structured literature review of the epidemiology and disease burden of non-alcoholic steatohepatitis (NASH)Povsic M, Wong OY, Perry R, Bottomley JAdvances in Therapy, 36, 1574–1594 (2019)View PublicationHepatologyLiterature/landscape reviews
2019A structured literature review of interventions used in the management of non-alcoholic steatohepatitis (NASH)Povsic M, Oliver L, Jiandani NR, Perry R, Bottomley JPharmacology research & perspectives. 2019;7(3):e00485View PublicationHepatologyLiterature/landscape reviews
2019Burden of disease and current management of dementia with lewy bodies: A literature reviewTahami Monfared AA, Meier G, Perry R, Joe DNeurol Ther 8, 289–305 (2019)View PublicationCNS/NeurologyLiterature/landscape reviews
2019The impact of perennial allergic rhinitis with/without allergic asthma on sleep, work and activity levelRodriguez Romano M, James S, Farrington E, Perry R, Elliott LAllergy, Asthma & Clinical Immunology, 15, 81 (2019)View PublicationAllergies, Respiratory diseasesEvidence synthesis/utility generation
2019The economic burden of pediatric asthma in the United States: Literature review of current evidencePerry R, Braileanu G, Palmer T, Stevens PPharmacoEconomics 37, 155–167 (2019)View PublicationRespiratory diseases, Pediatric careLiterature/landscape reviews
2019Nausea and vomiting of pregnancy and resource implications: The NVP Impact StudyGadsby R, Rawson V, Dziadulewicz E, Rousseau B, Collings HBritish Journal of General Practice 2019; 69 (680): e217-e223View PublicationWomen's healthTreatment pathways/burden of illness
2019Quality 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 StudyChiappella A, Witzig TE, Cocks K, Greenwood M, Williams A, Scott DW, Gascoyne RD, Yamamoto K, Jurczak W, Özcan M, Belada DBlood, 2019;134(Supp 1):3475View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2019Health-related quality of life in the ENDEAVOR study: carfilzomib-dexamethasone vs bortezomib-dexamethasone in relapsed/refractory multiple myelomaLudwig H, Moreau P, Dimopoulos MA, Mateos MV, Kaiser M, Hajek R, Feng S, Cocks K, Buchanan J, Weisel KBlood Cancer Journal, 2019;9:23, https://doi.org/10.1038/s41408-019-0181-0View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2019Convenience, 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 MLeukemia, 2019;33:2934-2946View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2019HSR19-107: Nivolumab for Newly Diagnosed Classical Hodgkin Lymphoma: Patient-Reported Outcomes From CheckMate 205 Cohort DRamchandren R, Ansell SM, Armand P, Engert A, Taylor F, Cocks K, Chen C, Bennett B, Moreno-Koehler A, Roeder A, Sumbul AJournal of the National Comprehensive Cancer Network, 2019;17(3.5):HSR19-107View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2019Nivolumab 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 trialReck 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 JEuropean Journal of Cancer, 2019;116:137-147View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2019Exploring 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 SThe Patient, 2019;12:611-619View PublicationHematologyQualitative exit and in-trial interviews
2019Development of a conceptual model to illustrate the symptom experience and humanistic burden associated with atopic dermatitis in adults and adolescentsGrant L, Larsen LS, Trennery C, Silverberg JI, Abramovits W, Simpson EL, Stalder J-F, Paty J, Hahn-Pedersen J, Kragh N, Bang B, Arbuckle RDermatitis, 2019;30(4):247-254View PublicationDermatology, Pediatric careQualitative patient-centered research and evaluation of COAs
2019International 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 processCoens 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 consortiumLancet Oncology, 2019;21(2):e83-e96View PublicationOncologyPsychometric evaluation and statistical analysis of COAs, Literature and COA instrument reviews
2019A 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 NeckCocks K, Contente M, Simpson S, DeRosa M, Taylor FC, Shaw JWPharmacoeEconomics, 2019;37:1041-1047View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2019Psychometric 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 MMPancreatology, 2019;19(1):182-190 View PublicationEndocrinology/Metabolic diseasesPsychometric evaluation and statistical analysis of COAs
2019Minimally important differences for interpreting EORTC QLQ-C30 scores in patients with advanced breast cancerMusoro JZ, Coens C, Frederic F, Katarzyna P, Fatima C, Russell NS, King MT, Cocks K, Sprangers MAG, Groenvold M, Velikova G, Flechtner H-HCancer Spectrum, 2019;3(3):pkz037View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2019Estimation of minimally important differences and responder definitions for EORTC QLQ-MY20 scores in multiple myeloma patientsSully K, Trigg A, Bonner N, Moreno-Koehler A, Trennery C, Shah N, Yucel E, Panjabi S, Cocks KEuropean Journal of Haematology, 2019;103(5):500-509View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2019Impact of Elotuzumab Plus Pomalidomide and Dexamethasone on Health-Related Quality of Life in Patients with Relapsed/Refractory Multiple Myeloma Enrolled in the ELOQUENT-3 StudyWeisel K, Paner A, Engelhardt M, Taylor F, Cocks K, Popa-McKiver M, Chen C, Cavo MEuropean Journal of Haematology, 2019;132(Supp 1):2288View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2019Linguistic validation of the CDQoL-TSQ for use in Thailand and ItalyWright A, Wells J, Brohan EValue in Health, 2019;22(Supp 2):S387View PublicationAnimal health, DermatologyCOA instrument development or modification
2019Health utilities and quality of life in individuals with tuberous sclerosis complex (TSC) who experience epileptic seizures: a web-based surveyTritton T, Bennett B, Brohan E, Grant L, Cooper A, Fladrowski C, Evanochko C, Neary M, Vieira J, Buffa V, KingswoodEpilepsy and Behavior, 2019;92:213-220View PublicationCNS/NeurologyQualitative patient-centered research and evaluation of COAs
2019Psychometric validation of Anti-Clot Treatment Scale and Treatment Satisfaction Questionnaire for Medication version II in Japanese Patients with Atrial FibrillationWatanabe-Fujinuma E, Banderas B, Koretsune Y, Kumagai K, Uchiyama S, Yamashita T, Yasaka M, Akiyama S, Briere JB, Dickie G, Cano SJJournal of Medical Economics, 2019;22(8): 798-805. View PublicationCardiovascularPsychometric evaluation and statistical analysis of COAs
2019Understanding key symptoms, side effects, and impacts of HR+/HER2- advanced breast cancer: Qualitative study findingsGalipeau N, Klooster B, Krohe M, Tang DH, Revicki DA, Cella DJ Patient Rep Outcomes, 2019;3: 10.View PublicationOncologyQualitative patient-centered research and evaluation of COAs
2019Content 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 patientsKrohe M, Tang D, Klooser B, Revicki D, Galipeau N, Cella DHealth Qual Life Outcomes, 2019; 17:92.View PublicationOncologyQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2019Understanding the life experience of Barth Syndrome from the perspective of adults: A qualitative one-on-one interview studyMazar I, Stokes J, Ollis S, Love E, Espensen A, Barth PG, Powers JH, Shields ALOrphanet Journal of Rare Disease, 2019;14(1): 243.View PublicationGenetic diseases, Rare diseasesQualitative patient-centered research and evaluation of COAs
2019Qualitative 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 APoster presented at WORLD Symposium 2019View PublicationGenetic diseasesQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2019Rater reliability testing of the Physician Wart Assessment for common warts: A noninterventional, observational studyShanler SD, Powala C, Shields AL, Bradshaw M, Schnyder JPoster presented at American Association of Dermatology Annual Meeting, Washington, DC, March 1-5, 2019DermatologyPsychometric evaluation and statistical analysis of COAs
2019Understanding key symptoms, side effects and impacts of HR+ and HER2- advanced breast cancer: qualitative patient interviewsCella D, Dillard S, Galipeau N, Higgins S, Klooster B, Krohe M, Revicki D, Tang D, Small TPresented at ISPOR, 2019OncologyQualitative patient-centered research and evaluation of COAs
2019Techniques 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 LPresented at 24th Annual Conference of the International Society for Quality of Life ResearchRare diseasesPsychometric evaluation and statistical analysis of COAs
2018.12Measurement of sickle cell disease symptoms from the patient perspective: Considerations for clinical trialsOjo O, Litcher-Kelly L, Mazar I, Klooster B, Ollis S, Chaston E, Roeder A, Treadwell M, Reasner DSPoster presented at 60th ASH Annual Meeting and Exposition, San Diego, CA USA, December 1-4 2018. Blood, 2018;132(Supplement 1): 3571.View PublicationHematologyQualitative patient-centered research and evaluation of COAs
2018.12Quality-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 StudyWeisel K, Paner A, Engelhardt M, Taylor F, Cocks K, Espensen A, Popa McKiver M, Chen C, Cavo MPresented at 60th ASH Annual Meeting and Exposition, San Diego, CA USA, December 1-4 2018OncologyPsychometric evaluation and statistical analysis of COAs
2018.11Multi-comparator ICERs in cost-effectiveness analysis to account for changes in clinical practice after the introduction of a new technologyHughes R, Lucherini S, Crossley A, Okhuoya PPoster presented at ISPOR, November 2018. Value in Health vol. 21,3,S376View PublicationDermatology, ImmunologyEconomic models
2018.11Patient influence on biosimilar uptake: The Nocebo effectPovsic M, O'Malley J, Enstone A, Rousseau BPoster presented at ISPOR, November 2018. Value in Health vol. 21,3,S181View PublicationLiterature/landscape reviews, Evidence synthesis/utility generation
2018.11A scenario analysis of the impact of treatment setting on health care cost and treatment outcomesLewis M, Tavella F, Okhuoya PPoster presented at ISPOR, November 2018. Value in Health vol. 21,3,S176-177View PublicationEndocrinology/Metabolic diseasesLiterature/landscape reviews, Evidence synthesis/utility generation, Treatment pathways/burden of illness
2018.11Cost effectiveness and budget impact thresholds in Health Technology AssessmentYi Y, Davies N, Tavella F, Okhuoya PPoster presented at ISPOR, November 2018. Value in Health vol. 21,3,S361View PublicationHTA/reimbursement, Economic models
2018.11Europe-wide spread of carbapenem-resistant bacteria: Epidemiology and disease burdenPalmer T, Collings H, Tavella FPoster presented at ISPOR, November 2018. Value in Health vol. 21,3,S154View PublicationInfectious diseasesTreatment pathways/burden of illness
2018.11The current reimbursement landscape for digital health in the UK: How far are we from a centralised, national system?Braileanu G, Tavella F, Rousseau BPoster presented at ISPOR, November 2018. Value in Health vol. 21,3,S188View PublicationMedical devicesLiterature/landscape reviews
2018.11EU5 and pharmaceutical responses to the spread of carbapenem-resistant bacteria: A policy and pipeline reviewCollings H, Palmer T, Tavella FPoster presented at ISPOR, November 2018. Value in Health vol. 21,3,S156-157View PublicationInfectious diseasesAccess/HEOR consultancy
2018.11Modelling the budget impact and health outcomes of the anti PD-1/PD-L1 class in cancer care in AustriaVan Bavel J, Lucherini S, Zielinski C, Walter E, Eckart G, Davies N, Okhuoya P, Pellissier J, Roediger APoster presented at ISPOR, November 2018View PublicationOncologyEconomic models
2018.11Assessing the impact of anti PD-1/PD-L1 inhibitors on health and budget in BelgiumVan Bavel J, Lucherini S, Vermeersch S, Annemans L, Bento-Abreu A, Davies N, Okhuoya P, Pelliessier J, Roediger APoster presented at ISPOR, November 2018OncologyEconomic models, Evidence synthesis/utility generation
2018.11Modelling the budget impact and health outcomes of the anti PD-1/PD-L1 class in cancer care in ItalyVan Bavel J, Lucherini S, Spandonaro F, Polistena B, Dirodi B, Eterno V, Didoni G, Davies N, Pellissier J, Roediger APoster presented at ISPOR, November 2018View PublicationOncologyEconomic models
2018.11Real-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 YPoster presented at ISPOR, November 2018. Value in Health vol. 21,3,S15View PublicationOncologyLiterature/landscape reviews
2018.11Management of dry eye disease: Results from a survey of healthcare professionals in the United KingdomHossain P, Christopoulou D, Anstee K, Okhuoya PPoster presented at the Medical Contact Lens & Ocular Surface Association (MCLOSA) conference, November 2018OphthalmologyTreatment pathways/burden of illness
2018.11Modelling the budget impact and health outcomes of the anti PD-1/PD-L1 class in cancer care in SloveniaVan Bavel J, Lucherini S, Rajer M, Jovanovic S, Knzaj Z, Burnik T, Davies N, Toghanian S, Pellissier J, Roediger APoster presented at EUPHA, 2018OncologyEconomic models
2018.11Assessing the impact of PD-1/PD-L1 inhibitors on health and budget in BelgiumVan Bavel J, Lucherini S, Vermeersch S, Annemans L, Bento-Abreu A, Davies N, Okhuoya P, Pelliessier J, Roediger AEuropean Journal of Public Health, vol. 28, Issue suppl_4, November 2018View PublicationOncologyEconomic models, Evidence synthesis/utility generation
2018.11Considerations for using a web-based system to collect patient-reported outcome (PRO) data Tritton T, Panter C, Johnson C, Bradley H, Tinsley K, Bennett BOral presentation at ISPOR, November 2018. Value in Health, 2018;21(Supp 3):S12View PublicationLiterature and COA instrument reviews
2018.11CheckMate 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-S1048View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2018.11Patient and caregiver web-based survey: health utilities in tuberous sclerosis complex (TSC) patient populationBennett B, Cooper A Fladrowski C, Evanochko C, Neary MP, Vieira J, Buffa V, Grant L, Tritton T, Kingswood CPoster presented at ISPOR, November 2018. Value in Health, 2018;21(Supp 3):S349View PublicationCNS/Neurology, Rare diseases, Genetic diseasesPsychometric evaluation and statistical analysis of COAs
2018.11Best 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 IPoster presented at ISPOR, November 2018. Value in Health, 2018;21(Supp 3):S326View PublicationQualitative patient-centered research and evaluation of COAs
2018.11Adapting 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 RPoster presented at ISPOR, November 2018. Value in Health, 2018;21(Supp 3):S242View PublicationRespiratory diseasesQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2018.11Understanding 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):S434View PublicationOphthalmologyLiterature and COA instrument reviews
2018.11Exploring 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 RPoster presented at Action Duchenne International Conference, November 2018Musculoskeletal diseasesQualitative patient-centered research and evaluation of COAs
2018.11Cognitive debriefing interview studies to inform patient-reported outcome questionnaire development: a literature review and suggested reporting guidelinesDickie G, Mazar I, Espensen A, Lamoureux RL, Severson K, Padilla B, Shields ALPoster presented at ISPOR, November 2018. Value in Health, 2018;21(3): S327.View PublicationLiterature and COA instrument reviews
2018.11Vision 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 replacementGalipeau N, Litcher-Kelly L, Chacko J, Bowyer B, Moreno-Koehler A, Shields ALPoster presented at ISPOR, November 2018OphthalmologyPsychometric evaluation and statistical analysis of COAs
2018.11Promoting patient engagement in the development of patient-reported outcome measures for rare diseasesMazar I, Power SL, Bruell KA, Litcher-Kelly LPoster presented at Conference on Clinical Research for Rare Diseases, Rockland MD, USA, 19 November 2018Rare diseasesCOA instrument development or modification
2018.11A discrete choice exercise to evaluate factors driving growth hormone deficient (GHD) patient preferences for injection and injection device featuresMcNamara M, Westhead H, Gross HJ, Turner-Bowker DM, Yaworsky A, Pleil A, Loftus JPoster presented at ISPOR, November 2018. Value in Health, 2018;21(SUPPLEMENT 3): S139-S140.View PublicationEndocrinology/Metabolic diseasesPatient preference research
2018.11What matters to individuals with sickle cell disease? Patient input on the relevant and important symptoms and impacts of the conditionOjo O, Litcher-Kelly L, Mazar I, Klooster B, Ollis S, Chaston E, Roeder A, Reasner DSPoster presented at ISPOR, November 2018. Value in Health, 2018;21(SUPPLEMENT 3): S472-S473.View PublicationHematologyQualitative patient-centered research and evaluation of COAs, Literature and COA instrument reviews
2018.1Triangulating estimates of meaningful change or difference in patient-reported outcomes: application of a correlation-based weighting procedureHarper A, Trennery C, Sully K, Trigg AOral Presentation at ISOQOL, October 2018View PublicationPsychometric evaluation and statistical analysis of COAs
2018.1A 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 CPoster presented at ISOQOL, October 2018Women's healthQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2018.1Exploring the value of real-time data capture to understand the patient experience of Hand OsteoarthritisGatsi S, Arbuckle R, Berry P, Chauhan D, Park J, Wells J, Panter CPoster presented at ISOQOL, October 2018View PublicationMusculoskeletal diseasesQualitative patient-centered research and evaluation of COAs
2018.1The latent structure of the Oxford Knee Score: learnings for validation employing big dataTrigg A, Plamer TPoster presented at ISOQOL, October 2018View PublicationPsychometric evaluation and statistical analysis of COAs
2018.1Patient perspectives on the value of reduced infusion frequency and longevity of protection for prophylactic treatment of hemophilia AWells JR, Gater A, Marshall C, Tritton T, Vashi PB, Kessabi S Poster presented at National Hemophilia Fpoundation (NHF) Bleeding Disorders Conference, October 2018HematologyQualitative patient-centered research and evaluation of COAs
2018.1The 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 RWorkshop presented at ISOQOL, October 2018Respiratory diseases, Pediatric carePsychometric evaluation and statistical analysis of COAs, COA instrument development or modification, Qualitative patient-centered research and evaluation of COAs
2018.1Evaluating 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 JPoster presented at ISOQOL, October 2018View PublicationPediatric care, Respiratory diseasesPsychometric evaluation and statistical analysis of COAs
2018.1Development 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 considerationsScott J, Tatlock S, Kilgariff S, Stevens M, Rusch S, Arbuckle A, Abetz-Webb LPoster presented at ISOQOL, October 2018Respiratory diseases, Pediatric careQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2018.1Interpretation guidelines to define clinical relevance for Patient-Reported Outcome (PRO) MeasuresCocks K, Sully K, King MWorkshop presented at ISOQOL, October 2018Literature and COA instrument reviews, Psychometric evaluation and statistical analysis of COAs
2018.1Qualitative evidence on the content validity of EORTC QLQ-C30: Initial findingsCocks K, Tolley C, Grant L, Wells J, Wheelwright S, Tomaszewski K, Gronvold M, Bottomley A, Fitzsimmons D, Velikova G, Oerlemans SOral presentation at ISOQOL, October 2018View PublicationOncologyQualitative patient-centered research and evaluation of COAs
2018.1Qualitative methods for exploring meaningful change thresholds, including the use of vignettes: value, implementation and learningsGrant L, Trennery C, Larsen LS, Arbuckle RPoster presented at ISOQOL, October 2018Qualitative patient-centered research and evaluation of COAs
2018.1Psychometric validation of the Endometriosis Symptoms Diary (ESD) and Endometriosis Impact Scale (EIS): Findings from an interventional studyHaberland C, Gater A, Wessiepe D, Schmitz H, Gerlinger C, Seitz COral presentation at ISOQOL, October 2018Women's healthPsychometric evaluation and statistical analysis of COAs
2018.1Understanding the patient experience of presbyopia via a social media listening studyLeteneux-Pantais C, Viriato D, Wolffsohn J S, Kilgariff S, Kommineni J, Tyagi NPoster presented at ISOQOL, October 2018OphthalmologyLiterature and COA instrument reviews
2018.1Clinician (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 MPoster presented at ISOQOL, October 2018Respiratory diseases, Pediatric careQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2018.09CheckMate 227: Patient-Reported Outcomes of First-Line Nivolumab + Ipilimumab in High Tumor Mutational Burden Advanced NSCLCBrahmer 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 MOral presentation at WCLC, September 2018 Journal of Thoracic Oncology, 2018;13(10):S332View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2018.09Content Validity of Two Patient-reported Outcome Questionnaires to Measure the Impacts Experienced by Individuals with Glabellar LinesBurgess CM, Mariwalla K, Green JB, Banderas BF, Foley C, Turner-Bowker D, Shields AL, Rubio RG, Park EPresented at 27th European Academy of Dermatology and Venereology Congress, Paris, France, September 12-16 2018DermatologyQualitative patient-centered research and evaluation of COAs
2018.09Content Validity of Patient- and Clinician-reported Questionnaires Assessing the Appearance-based Severity of Glabellar LinesBurgess CM, Mariwalla K, Green JB, Banderas BF, Foley C, Turner-Bowker D, Shields AL, Rubio RG, Park EPresented at 27th European Academy of Dermatology and Venereology Congress, Paris, France, September 12-16 2018View PublicationDermatologyQualitative patient-centered research and evaluation of COAs
2018.08Assessing 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 CPoster presented at European Congress on Epileptology, August 2018Genetic diseases, CNS/Neurology, Rare diseasesQualitative patient-centered research and evaluation of COAs
2018.08Statistical analysis of patient-reported outcome data in randomised controlled trials of locally advanced and metastic breast cancer: a systematic reviewPe 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-e469View PublicationOncologyLiterature and COA instrument reviews
2018.07Cognitive 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 CPoster 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 diseasesQualitative patient-centered research and evaluation of COAs
2018.07Exploring the Sign and Symptom Experience of Barth Syndrome in Adult and Adolescent PopulationsStokes J, Aiudi A, Mazar I, Elliott M, Dillard S, Ollis S, Love E, Shields AL, Gwaltney CPoster 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 careQualitative patient-centered research and evaluation of COAs
2018.07Understanding the Life Experience of Barth Syndrome from the Perspective of Older IndividualsUsmani OS, Lavorini F, Marshall J, Dunlop W, Heron L, Farrington E, Dekhuijzen RPoster 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 diseasesQualitative patient-centered research and evaluation of COAs
2018.06Multi-comparator ICER: A new framework for cost-effectiveness analysisRatcliffe A, Lucherini S, Hughes R, Okhuoya PPoster presented at the HTAi conference, June 2018Economic models
2018.06A contextual model for evaluating the value of multi-indication drugsWu E, Pellissier J, Bellanca L, Normand R, Hughes R, Ratcliffe APresented at the HTAi International Scientific Programme Committee, June 2018OncologyEconomic models, Evidence synthesis/utility generation
2018.06At-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 APoster presented at PROMS Research Conference, June 2018Qualitative patient-centered research and evaluation of COAs
2018.06Exploring the type 2 diabetes mellitus experience from the patient perspectiveYu-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 PublicationEndocrinology/Metabolic diseasesQualitative patient-centered research and evaluation of COAs, Literature and COA instrument reviews
2018.06Patient perspectives on the burden of type 2 diabetes mellitus treatmentYu-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 PublicationEndocrinology/Metabolic diseasesQualitative patient-centered research and evaluation of COAs, Literature and COA instrument reviews
2018.05Review of frequently implemented patient reported outcomes in current prostate cancer clinical trialsGrimes R, Grant L, Kaur S, Brookes B, Bennett BPoster presented at ISPOR, May 2018. Value in Health, 2018;21(Supp 1):S225View PublicationOncology, Men's healthLiterature and COA instrument reviews
2018.05Development of patient-reported outcome measures for masseter prominenceFabi S, Narurkar V, Donofrio L, Banderas B, Garcia JPoster presented at ISPOR, May 2018. Value in Health, 2018;21(SUPPLEMENT 1): S127.View PublicationMusculoskeletal diseasesCOA instrument development or modification, Qualitative patient-centered research and evaluation of COAs
2018.05Physician practices and perceived barriers concerning adult vaccination of patients with Medicare versus commercial insuranceMcNamara M, Buck P, Yan S, Friedland LR, Lerch K, Murphy A, Turner-Bowker DM, Taylor F, Lamoureux R, Klooster B, Hogea CPresented at the 48th National Immunization Conference, Atlanta, GA, 15-18 May 2018VaccinesQualitative patient-centered research and evaluation of COAs
2018.05Patient 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 CRPoster presented at ISPOR, May 2018. Values in Health, 2018;21(SUPPLEMENT 1): S172.View PublicationCardiovascularPsychometric evaluation and statistical analysis of COAs
2018.05Evaluation of modified item characteristics on item comprehension and psychometric performanceTurner-Bowker DM, DeRosa M, Bjorner JBPoster presented at ISPOR, May 2018. Value in Health, 2018;21(1): S225-S226.View PublicationCNS/NeurologyPsychometric evaluation and statistical analysis of COAs, Qualitative patient-centered research and evaluation of COAs
2018.05Psychometric evaluation of questionnaires assessing injection regimen burden in growth hormone deficient (GHD) adults and children treated with growth hormoneTurner-Bowker DM, Yaworsky A, Palladino A, Pleil A, Shields A, Kelly M, Lamoureux RE, Love E, Morrissey L, Loftus JPoster presented at ISPOR, May 2018. Value in Health, 2018;21(1): S225.View PublicationEndocrinology/Metabolic diseases, Pediatric carePsychometric evaluation and statistical analysis of COAs
2018.04Validation of the pruritus and symptoms assessment for atopic dermatitis in adults with moderate to severe atopic dermatitisLebwohl 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 LPoster presented at Georg Rajka International Symposium on Atopic Dermatitis, April 2018DermatologyPsychometric evaluation and statistical analysis of COAs
2018.04Understanding the patient perspective of small cell lung cancerRydén A, Ollis S, Love E, Shields AL, Jiang H, Dennis PAPoster presented at the 8th European Lung Cancer Congress, Geneva, Switzerland 11-14 April 2018. Journal of Thoracic Oncology, 2018;13(4): S44.View PublicationOncologyQualitative patient-centered research and evaluation of COAs, Literature and COA instrument reviews
2018.03Insights 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 KingdomHodgson M, Perry R, Ali A, Price JPoster presented at the Diabetes UK Professional Conference, March 2018Endocrinology/Metabolic diseases, ImmunologyEvidence synthesis/utility generation
2018Cost-utility analysis of an intervention designed to reduce the critical handling error of insufficient inspiratory effortForster R, Ratcliffe A, Lewis M, Crossley A, Lopez Bastida J, Dunlop WThe European Journal of Health Economics, vol. 19, 1303–1318 (2018)View PublicationRespiratory diseases, Medical devicesEconomic models, Evidence synthesis/utility generation
2018Critical inhaler errors in asthma and COPD: A systematic review of impact on health economicsUsmani OS, Lavorini F, Marshall J, Dunlop W, Heron L, Farrington E, Dekhuijzen RRespiratory Research, 19:10 (2018)View PublicationRespiratory diseases, Medical devicesLiterature/landscape reviews
2018A contextual model for evaluating the value of multi-indication drugsWu E, Pellissier J, Bellanca L, Normand R, Hughes R, Ratcliffe AInternational Journal of Technology Assessment in Health Care, 34(S1), 18-19View PublicationOncologyEconomic models, Evidence synthesis/utility generation
2018The economic burden of small cell lung cancer: A systematic review of the literatureEnstone A, Greaney M, Povsic M, Wyn R, Penrod J, Yuan YPharmacoEconomics Open, 2:125–139 (2018)View PublicationOncologyLiterature/landscape reviews
2018Real-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 YPLoS ONE 14(7): e0219622View PublicationOncologyLiterature/landscape reviews
2018Moving forward toward standardizing analysis of quality of life data in randomized cancer clinical trialsBottomley 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) ConsortiumClinical Trials, 2018;15(6):624-630View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2018Evaluation of a crosswalk between the European Quality of Life Five Dimension Five Level and the Menopause-Specific Quality of Life questionnaireCoon C, Bushmakin A, Tatlock S, Williamson N, Moffatt M, Arbuckle R, Abraham LClimacteric, 2018;21(6):566-573View PublicationWomen's healthPsychometric evaluation and statistical analysis of COAs
2018Interpreting European Organisation for Research and Treatment for Cancer Quality of life Questionnaire core 30 scores as minimally importantly different for patients with malignant melanomaMusoro JZ, Bottomley A, Coens C, Eggermont AM, King MT, Cocks K, Sprangers MA, Groenvold M, Velikova G, Flechtner HH, Brandberg YEuropean Journal of Cancer, 2018;104:169-181View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2018Establishing anchor-based minimally important differences (MID) with the EORTC quality-of-life measures: a meta-analysis protocolMusoro 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 CBMJ Open, 2018;8:e019117View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2018A Mixed Methods Approach to Generate Meaningful Change Estimates EORTC QLQ-MY20Yucel E, Trigg A, Sully K, Harper A, Bonner N, Shah N, Panjabi S, Cocks KBlood, 2018;132:5912View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2018Working 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 ConsortiumBrain Tumour Magazine: World Edition 2017/2018View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2018Psychometric evaluation of electronic diaries assessing side-effects of hormone therapyTatlock S, Abraham L, Bushmakin A, Moffatt M, Williamson N, Coon C, Arbuckle RClimacteric; 2018:21(6):594-600View PublicationWomen's healthPsychometric evaluation and statistical analysis of COAs
2018Development 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 ACurrent Medical Research and Opinion, 2018: 1-10.View PublicationDermatologyQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2018Measuring Health-Related Quality of Life in Tuberous Sclerosis Complex–psychometric evaluation of three instruments in individuals with refractory epilepsyDe Vries PJ, Franz DN, Curatolo P, Nabbout R, Neary M, Herbst F, Sully K, Brohan E, Bennett B, Lawson JAFrontiers in Pharmacology, 2018;9:964View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2018Use of both qualitative and quantitative methods to estimate meaningful change thresholds for key endpoints in pediatric asthma trialsArbuckle R, Staunton H, Sully K, Tomkins S, Khindri S, Svedsater H, Nelsen L Value in Health, 2018;22(Supp 3):340-347View PublicationPediatric care, Respiratory diseasesQualitative patient-centered research and evaluation of COAs
2018Fatigue, treatment satisfaction and health‐related quality of life among patients receiving novel drugs suppressing androgen signalling for the treatment of metastatic castrate‐resistant prostate cancerDearden L, Shalet N, Artenie C, Mills A, Jackson C, Grant L, Gater AEuropean Journal of Cancer Care, 2018;28(1):e12949View PublicationOncology, Men's healthQualitative patient-centered research and evaluation of COAs, Psychometric evaluation and statistical analysis of COAs
2018Understanding and measuring symptoms and health status in asthma COPD overlap: content validity of the EXACT and SGRQNelsen L, Gater A, Panter C, Tolley C, Lee L, Pascoe SJournal of Patient Reported Outcomes. 2:18View PublicationRespiratory diseasesQualitative patient-centered research and evaluation of COAs
2018Evaluation 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 057Reck M, Brahmer J, Bennett B, Taylor F, Penrod JR, DeRosa M, Dastani H, Spigel DR, Gralla RJEuropean Journal of Cancer, 2018;102:23-30View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2018Qualitative Research to Explore the Patient Experience of X-Linked Hypophosphatemia and Evaluate the Suitability of the BPI-SF and WOMAC® as Clinical Trial End PointsTheodore-Oklota C, Bonner N, Spencer H, Arbuckle R, Chen C-Y, Skrinar AValue in Health, 2018;21(8):973-983View PublicationGenetic diseases, Endocrinology/Metabolic diseasesQualitative patient-centered research and evaluation of COAs
2018International 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 leukaemiavan 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 GroupQuality of Life Research, 2018;27(2):333-345View PublicationOncologyQualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Literature and COA instrument reviews
2018Development of a new patient‐reported outcome (PRO) measure on the Impact of Nighttime Urination (INTU) in patients with nocturia—Psychometric validationBennett JB, Gillard KK, Banderas B, Abrams S, Cheng L, Fein SNeurourology and Urodynamics, 2018;37: 1678–1685.View PublicationUrology/UrogenitalPsychometric evaluation and statistical analysis of COAs
2018Development 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 NAmerican Journal of Gastroenterology, 2018;29:2: 152-164.View PublicationGastroenterologyQualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs
2018Understanding the experience of MPS I patients to improve outcomes assessments: A literature reviewHamed A, Litcher-Kelly L, Yaworsky A, Pabla A, Pollisard L, Munoz-Rojas MV, Ollis S, Kelly M, Shields APoster presented at 15th International Symposium on MPS and Related DiseasesGenetic diseases, Endocrinology/Metabolic diseasesLiterature and COA instrument reviews
2018Development and initial psychometric evaluation of patient reported outcome questionnaires to evaluate the symptoms and impact of hidradenitis suppurativaKimball A, Sundarum M, Banderas B, Foley C, Shields ALJournal of Dermatological Treatment, 2018;29:2: 152-164.View PublicationDermatology, ImmunologyQualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs
2018Patient-reported treatment satisfaction with rivaroxaban in Japanese non-valvular atrial fibrillation patients: an observational studyKoretsune Y, Kumagai K, Uchiyama S, Yamashita T, Masahiro Y, Watanabe-Fujinuma E, Banderas BF, Akiyama S, Okayama Y, Briere JB, Dickie G, Cano SJCurrent Medical Opinion and Research, 2018: 1-8.View PublicationCardiovascularPsychometric evaluation and statistical analysis of COAs
2018Burden and impacts of daily recombinant human growth hormone (r-hGH) injections in growth hormone deficient (GHD) paediatric patientsLoftus J, Pleil A, Lamoureux RE, Turner-Bowker DM, Yaworsky A, Kelly M, Love E, McNamara M, Westhead H, Palladino APoster presented at 57th Annual European Society for Paediatric Endocrinology (ESPE) MeetingView PublicationEndocrinology/Metabolic diseases, Pediatric careQualitative patient-centered research and evaluation of COAs
2018Quality of Care in Rheumatoid Disease from the Clinician Perspective: A Modified Delphi Panel ApproachO'Shea F, Taylor PC, Dickie G, Yaworsky A, Banderas B, Kachroo SRheumatology and Therapy, 2018;5(1): 87-98.View PublicationMusculoskeletal diseases, ImmunologyQualitative patient-centered research and evaluation of COAs, Literature and COA instrument reviews
2018Quality of Care in Ulcerative Colitis: A Modified Delphi Panel ApproachPeyrin-Biroulet L, Baumgart DC, Armuzzi A, Gionchetti A, Sebastian S, Danese S, Magro F, Higgins S, Yaworsky A, Banderas B, Kachroo SDigestive Diseases, 2018;36(5): 346-353.View PublicationGastroenterology, ImmunologyQualitative patient-centered research and evaluation of COAs, Literature and COA instrument reviews
2018Impact 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 studyReck M, Taylor F, Penrod JR, DeRosa M, Morrissey L, Dastani H, Orsini L, Gralla RJJournal of Thoracic Oncology, 2018;13(2): 194-204.View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2018Use of antipsychotic blood levels in clinician decision making: A cross-over study using clinical vignettes of patients with schizophreniaSavitz A, Melkote R, Riley R, Pobre MA, McQuarrie K, Williamson D, Banderas BPsychiatry Res. 2018;267: 25-29.View PublicationCNS/NeurologyQualitative patient-centered research and evaluation of COAs
2018Informing a priori Sample Size Estimation in Qualitative Concept Elicitation Interview Studies for Clinical Outcome Assessment Instrument DevelopmentTurner-Bowker DM, Lamoureux RE, Stokes J, Litcher-Kelly L, Galipeau N, Yaworksy A, Solomon J, Shields ALValue in Health, 2018;21(7): 839-842.View PublicationQualitative patient-centered research and evaluation of COAs, Literature and COA instrument reviews
2018Qualitative research to explore the patient experience of X-Linked Hypophosphatemia and evaluate the suitability of the BPI-SF and WOMAC® as clinical trial endpointsTheodore-Oklota C, Bonner N, Spencer H, Arbuckle R, Chen C-Y, Skrinar AValue in Health, 2018;21(8):973-983View PublicationEndocrinology/Metabolic diseases, Genetic diseasesQualitative patient-centered research and evaluation of COAs
2018Understanding relationships between symptoms and impacts through a narrative analysis lensSolomon J, Shields AL, Globe D, Foley C, Roy A, Pompiluus F, Yaworsky A, Ghate S, Perez JRPoster presented at ISOQOL, 2018Qualitative patient-centered research and evaluation of COAs
2017.11Maternal 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 GermanyIadeluca L, Farrington E, McLean T, Rousseau B, Agosti Y, Absalon J, Anderson ASPoster presented at ISPOR, November 2017. Value in Health vol. 20,9,PA797-A798View PublicationWomen's health, Infectious diseasesLiterature/landscape reviews, Treatment pathways/burden of illness
2017.11Understanding the barriers to vaccine access and uptake in EU5: Rotavirus vaccination case studyCollings H, Fadeyi I, Tavella F, Heron LPoster presented at ISPOR, November 2017. Value in Health vol. 20,9,PA795View PublicationGastroenterology, Infectious diseases, VaccinesLiterature/landscape reviews, Access/HEOR consultancy
2017.11Differences in vaccine pricing between high-income and low-income marketsFadeyi I, McLean T, Tavella F, Heron LPodium presentation at ISPOR, November 2017. Value in Health vol. 20,9,PA411View PublicationVaccinesLiterature/landscape reviews
2017.11Market access challenges to PD-1 immunotherapies: Lessons from NICEMcLean T, Tavella F, Heron LPoster presented at ISPOR, November 2017. Value in Health vol. 20,9,PA470View PublicationOncologyAccess/HEOR consultancy
2017.11Initiatives that impact pricing and reimbursement of orphan (and ultra orphan) drugs: Review of European trendsRousseau B, Poinas AC, Oliver L, Collings HPoster presented at ISPOR, November 2017. Value in Health vol. 20,9,PA695-A696View PublicationRare diseasesHTA/reimbursement
2017.11Assessing the joint probability of cost-effectiveness and affordability in decision makingYi Y, Lucherini S, Bellanca L, Heron LPoster presented at ISPOR, November 2017. Value in Health vol. 20,9,PA753View PublicationEconomic models, Evidence synthesis/utility generation
2017.11Cost-utility analysis of a novel breath-triggered aerosol inhaler which has been designed to reduce the critical handling error of insufficient inspiratory effortForster R, Ratcliffe A, Lewis M, Crossley A, Lopez Bastida J, Dunlop WPoster presented at ISPOR, November 2017. Value in Health vol. 20,9,PA586View PublicationRespiratory diseases, Medical devicesEconomic models, Evidence synthesis/utility generation
2017.11Predicting EQ-5D utility index scores for gastric cancer patients in Japan: a preliminary modelPike J, Maglinte GA, Rider A, Cocks K, Taylor F, Contente M, Calvo EPoster presented at ISPOR, November 2017. Value in Health, 2017;20(9): PA447.View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2017.11Qualitative 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 APoster presented at ISPOR, November 2017. Value in Health, 2017;20(9):PA450View PublicationOncology, Men's healthQualitative patient-centered research and evaluation of COAs
2017.11Evaluating patient reported outcomes commonly used in current lung cancer clinical trialsGrimes R, Grant L, Kaur S, Spencer H, Brookes B, Bennett BPoster presented at ISPOR, November 2017. Value in Health, 2017;20(9)PA764View PublicationOncologyLiterature and COA instrument reviews
2017.11Are 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 KPoster presented at ISPOR, November 2017. Value in Health, 2017;20(9):PA456View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2017.11Helath-related quality of life in oncology - are we getting better?Byrne K, Simpson S, Bennett B, Rider A, Halworth P, Desai T, Cocks KPoster presented at ISPOR, November 2017. Value in Health, 2017;20(9):PA456View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2017.11Special considerations for conducting qualitative interviews with cancer patients and their caregivers for the purpose of developing cinical outcome assessmentsSpencer H, Grant L, Kaur S, Grimes R, Brookes B, Bennett BPoster Presented at ISPOR, November 2017. Value in Health, 2017;20(9):PA777View PublicationOncologyLiterature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs
2017.11Understanding 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 goutBennett B, Tatlock S, Rudell K, Manson SWorkshop at ISPOR, November 2017OncologyQualitative patient-centered research and evaluation of COAs
2017.11Engaging patients in the development and validation of patient-reported outcome (PRO) measures as partners, not just participantsPanter C, Wells J, Williamson N, Kaur S, Tatlock S, Hall R, Gater APoster Presented at ISPOR, November 2017. Value in Health, 2017;20(9):PA776-A777View PublicationLiterature and COA instrument reviews, COA instrument development or modification
2017.11Evaluation of patient (PRO) and observer-reported outcomes (OBSRO) measures regarding acceptability and palatability of eltrombopag in a poediatric populationSully K, Roy A, Bennett B, D'Alessio D, Beall S, Singer STPoster Presented at ISPOR, November 2017. Value in Health, 2017;20(9):PA691View PublicationPediatric care, HematologyLiterature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs
2017.11Rare Diseases, Are Caregivers Just as Affected as Patients?Bonner N, Hall R, Tritton T, Grimes R, Trennery C, Spencer H, Bennett BPoster presented at ISPOR, November 2017. Value in Health, 2017;20(9):PA562View PublicationRare diseasesLiterature and COA instrument reviews
2017.11Using a mixed methods approach to determine the item-scale structure and scoring for clinical outcome assessmentsWilliamson N, Johnson C, Cocks K, Bennett B, Tolley C, Simpson SPoster presented at ISPOR, November 2017. Value in Health, 2017;20(9):PA778View PublicationQualitative patient-centered research and evaluation of COAs, Psychometric evaluation and statistical analysis of COAs
2017.11Qualitative 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 BPoster presented at ISPOR, November 2017. Value in Health, 2017;20(9):PA761View PublicationOphthalmologyQualitative patient-centered research and evaluation of COAs
2017.11A 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 JWPoster presented at ISPOR, November 2017. Value in Health, 2017;20(9)PPA450View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2017.11Development and psychometric evaluation of an owner-completed measure of feline health and quality of lifeTatlock S, Williamson N, Arbuckle R, Gober MPoster presented at ISPOR, November 2017. Value in Health, 2017;20(9):PA761View PublicationAnimal healthCOA instrument development or modification, Psychometric evaluation and statistical analysis of COAs, Qualitative patient-centered research and evaluation of COAs
2017.11Special considerations for conducting qualitative interviews with cancer patients and their caregivers for the purpose of developing cinical outcome assessmentsSpencer H, Grimes R, Kaur S, Grant L, Bennett B, Brookes BPoster Presented at ISPOR, November 2017. Value in Health, 2017;20(9):PA777View PublicationOncologyQualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Literature and COA instrument reviews
2017.11Association 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 neckDeRosa M, Cocks K, Korytowsky B, Contente M, Taylor F, Shaw JWPoster presented at ISPOR, November 2017. Value in Health, 2017;20(9): PA447.View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2017.11Agreement between patient and clinician ratings of disease severity in hidradenitis suppurativa, rheumatoid arthritis, and chronic plaque psoriasisFoley C, Banderas B, Sen R, Yip C, Dickie G, Lamoureux RPoster presented at ISPOR, November 2017. Value in Health, 2017;20(9): PA680-A681.View PublicationDermatology, ImmunologyPsychometric evaluation and statistical analysis of COAs
2017.11Qualitative research methods for collecting, analyzing, and presenting patient-reported data on noticeable and important change in disease-related signs and symptomsMazar I, Stokes J, Foley C, Galipeau N, Shields AL Poster presented at ISPOR, November 2017. Value in Health, 2017;20(9): PA764.View PublicationQualitative patient-centered research and evaluation of COAs
2017.11The use of intra-class correlation coefficients to assess test-retest reliabilities in psychometric evaluations of patient-reported outcome measuresSen R, Yip C, Severson KPoster presented at ISPOR, November 2017. Value in Health, 2017;20(9): PA768.View PublicationPsychometric evaluation and statistical analysis of COAs
2017.1Interpretation Guidelines to Define Clinical Relevance for Patient-Reported Outcome (PRO) MeasuresCocks KWorkshop at ISOQOL, October 2017Psychometric evaluation and statistical analysis of COAs
2017.1Incorporating usability and feasibility testing of electronic patient-reported outcome measures as part of clinical trial development: an example from chronic pain trialsAbraham L, Gater A, Tolley C, Panter C, O'Donohoe PPoster presented at ISOQOL, October 2017CNS/NeurologyCOA instrument development or modification
2017.1Qualitatively 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 KWorkshop at ISOQOL, October 2017Pediatric careQualitative patient-centered research and evaluation of COAs, Qualitative exit and in-trial interviews
2017.1Health status in patients with SCLC treated with Nivolumab Alone or combined with Ipilimumab: CheckMate 032Ardizzoni A, Farago AF, Atmaca A, Calvo E, Taylor F, Bennett B, Selvaggi G, Pieters A, Penrod JR, Yuan Y, Ross Camidge DPoster presented at World Conference on Lung Cancer of the International Association for the Study of Lung Cancer (IASLC), October 2017OncologyPsychometric evaluation and statistical analysis of COAs
2017.1Novel integrative approach combining patient, physician and empirical assessments for diagnosing secondary progressive multiple sclerosisMeier DP, Bennett B, Tolley C, Kilgariff S, Tomic D, Ziemssen TPoster 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 2017CNS/Neurology, ImmunologyCOA instrument development or modification
2017.09Acceptability and palatability assessments of eltrombopag in a pediatric populationSully K, Bennett B, D’Alessio D, Roy APoster presented at ESMO, September 2017Pediatric careQualitative patient-centered research and evaluation of COAs
2017.09Impact 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 PPoster presented at 32nd International Epilepsy Conference, September 2017CNS/Neurology, Genetic diseases, Rare diseasesPsychometric evaluation and statistical analysis of COAs
2017.09Understanding 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 AAbstract presented at International Congress of Inborn Errors, September, 2017Endocrinology/Metabolic diseasesQualitative patient-centered research and evaluation of COAs, Literature and COA instrument reviews
2017.09Characterization of Patients With Galactosialidosis and Sialidosis Type ICimms T, Ali Q A, Kilgariff S, Johnson C, Arbuckle R, Malkus B, Schatz A, Haller CPoster presented at International Congress of Inborn Errors, September 2017Genetic diseasesLiterature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs
2017.09Psychometric 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 KPoster presented at Annual Congress of the European Society and College of Veterinary Dermatology (ESVD-ESCD), September 2017Animal health, DermatologyPsychometric evaluation and statistical analysis of COAs
2017.09Qualitative 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 endpointsTheodore-Oklota C, Arbuckle R, Marshall C, Spencer HAbstract presented at International Meeting of Pediatric Endocrinology, September 2017Endocrinology/Metabolic diseases, Genetic diseasesQualitative patient-centered research and evaluation of COAs
2017.07Development of a Patient-Reported Outcome Instrument for the Measurement of the Sexual Impacts of PsoriasisCather JC, Horn EJ, Foley C, Sundaram M, Iovin R, Pompilus F, Stokes J, AL ShieldsPresented at the 4th World Psoriasis & Psoriatic Arthritis Conference. Stockholm, Sweden, July 8-11 2015Dermatology, ImmunologyCOA instrument development or modification
2017.06Development and validation of patient-reported outcome measures (PROMs): selecting the most appropriate qualitative research methods to establish content validityGrant L, Wells J, Kilgariff S, Marshall C, Gater APoster presented at Advances in Patient Reported Outcomes Research Conference, June 2017Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Literature and COA instrument reviews
2017.06Development 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 AAbstract presented at International Congress of Parkinson’s Disease & Movement Disorder, June 2017. Movement Disorders, 2017;32(Supp 2)View PublicationEndocrinology/Metabolic diseasesLiterature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs
2017.06Psychometric validation of a Patient-Reported Outcome questionnaire in patients with Pancreatic Exocrine InsufficiencyJohnson C, Williamson N, Janssen-van Solingen G, Arbuckle R, Johnson C, Simpson S, Staab D, Dominguez-Munoz E, Levy P, Connett G, Lerch MPoster presented at European Pancreatic Club (EPC) Meeting, June 2017Endocrinology/Metabolic diseasesPsychometric evaluation and statistical analysis of COAs
2017.06Cultural relevance of the global impact of Dravet Syndrome in Australia, Italy, the US and UKNabbout R, Auvin S, Cross JH, Guerrini R, Scheffer I, Thiele E, Chiron C, Irwin J, Mistry A, Williamson N, Grimes R, Bennett BPoster presented at European Paediatric Neurology Society (EPNS) conference, June 2017. European Journal of Paediatric Neurology, 2017;21(Supp 1):E187View PublicationCNS/NeurologyQualitative patient-centered research and evaluation of COAs
2017.06Cognitive 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 CPresented at 19th Annual Conference of the United Mitochondrial Disease Foundation (June 28 – July 1); Alexandria, VA USAGenetic diseases, Rare diseasesQualitative patient-centered research and evaluation of COAs
2017.06Cognitive 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 COral Presentation at 19th Annual Conference of the United Mitochondrial Disease Foundation (June 28 – July 1); Alexandria, VA USAGenetic diseasesQualitative patient-centered research and evaluation of COAs
2017.05Conducting 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 outcomesArbuckle R, Carson RT, Maltzahn R, Staunton HWorkshop presented at ISPOR, May 2017Qualitative exit and in-trial interviews
2017.05The use of qualitative (exit) interviews in clinical trials: Value, implementation and key considerationsGater A, Marshall C, Grant L, Wells JPoster presented at ISPOR, May 2017Qualitative exit and in-trial interviews
2017.05Understanding key symptoms, side effects and impacts of HR+ and HER2- advanced breast cancer: Literature review and expert interviewsKrohe M, Tolley C, Higgins S, Cella D, Revicki D, Small T, Tang DPoster presented at ISPOR, May 2017OncologyLiterature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs
2017.05How does measurement of multiple medication adherence differ between chronic diseases?Malmenäs M, Pednekar P, Bennett B, Borah BForum presented at ISPOR, May 2017Literature and COA instrument reviews
2017.05A worked example of using computer-assisted qualitative data analysis software (CAQDAS) to support content validity in patient-centered outcomes researchMarshall C, Grant L, Wells J, Williamson N, Gater APoster presented at ISPOR, May 2017View PublicationQualitative patient-centered research and evaluation of COAs
2017.05Respondent Understanding and User Experience with the Asthma Daily Symptom Diary (ADSD), a Novel Patient-Reported Outcome MeasureNelsen L M, Gater A, Bonner N, Hall R, Staunton H, Eremenco S, on behalf of the Patient-Reported Outcome Consortium’s Asthma Working GroupPoster presented at American Thoracic Society International Conference, May 2017. American Journal of Respiratory and Critical Care Medicine, 2017;195:A3334View PublicationRespiratory diseasesCOA instrument development or modification, Qualitative patient-centered research and evaluation of COAs
2017.05Preliminary 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 GroupPoster presented at American Thoracic Society International Conference, May 2017. American Journal of Respiratory and Critical Care Medicine, 2017;195:A3335View PublicationRespiratory diseasesPsychometric evaluation and statistical analysis of COAs
2017.05Characterizing the patient experience of Asthma COPD Overlap Syndrome and COPDNelsen LM, Tolley C, Gater A, Panter C, Pascoe S, Lee LAPoster presented at American Thoracic Society International Conference, May 2017. American Journal of Respiratory and Critical Care Medicine, 2017;195:A4721View PublicationRespiratory diseasesQualitative patient-centered research and evaluation of COAs
2017.05Qualitative 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 endpointsTheodore-Oklota C, Arbuckle R, Bonner N, Spencer HPoster presented at ISPOR, May 2017Genetic diseases, Endocrinology/Metabolic diseasesQualitative patient-centered research and evaluation of COAs
2017.05Psychometric 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 disorderTheodore-Oklota C, Brohan E, Marshall C, Tritton TPoster presented at ISPOR, May 2017Endocrinology/Metabolic diseases, Genetic diseasesPsychometric evaluation and statistical analysis of COAs
2017.05Understanding the symptoms, impacts and treatment side-effects of advanced bladder cancer from the perspective of the literature, clinicians, and patientsDegboe A, Banderas B, Halling K, Mazar I, Mann EPoster presented at ISPOR, May 2017OncologyLiterature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs
2017.05Analyses 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 JWPoster presented at ISPOR, May 2017OncologyPsychometric evaluation and statistical analysis of COAs
2017.05Techniques for tailoring an interview guide for pediatric concept elicitation and cognitive debriefing interviewsKrohe M, Morrissey L, Turner-Bowker, DM Poster presented at ISPOR, May 2017Pediatric careQualitative patient-centered research and evaluation of COAs
2017.05Saturation of sign and symptom concepts in concept elicitation studies with rare disease and vulnerable patient populationsMazar I, Stokes J, Shields AL  Poster presented at ISPOR, May 2017Rare diseasesQualitative patient-centered research and evaluation of COAs
2017.05Placement 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 SJPoster presented at ISPOR, May 2017COA instrument development or modification
2017.05Development and content validity of the Patient-Reported Intraocular Lens Questionnaire (PR-ILQ)Shields AL, Galipeau N, Chacko J, Lamoureux RE, Mazar I, Bowyer BPoster presented at ISPOR, May 2017OphthalmologyQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2017.05Exploring the sign and symptom experience of Barth Syndrome in adult and adolescent populationsStokes J, Aiudi A, Mazar I, Elliott M, Dillard S, Ollis S, Love E, Shields AL, Gwaltney CPoster presented at ISPOR, May 2017Genetic diseases, Rare diseases, Pediatric careQualitative patient-centered research and evaluation of COAs
2017.05Exploring and documenting the signs, symptoms, and impacts of primary mitochondrial disesaseStokes J, Covino J, Aiudi A, Mazar I, Dillard S, Ollis S, Love E, Shields AL, Gwaltney CPoster presented at ISPOR, May 2017Genetic diseasesQualitative patient-centered research and evaluation of COAs
2017.05Cognitive 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 JPoster presented at ISPOR, May 2017OncologyQualitative patient-centered research and evaluation of COAs
2017.05Content validity of questionnaires assessing injection regimen burden in growth hormone deficient (GHD) adults and children treated with growth hormoneTurner-Bowker DM, Shields A, Yaworsky A, Lamoureux R, Morrissey L, Kelly M, Love E, Pleil A, Hart G, Hershkovitz O, Loftus JPoster presented at ISPOR, May 2017Endocrinology/Metabolic diseases, Pediatric careQualitative patient-centered research and evaluation of COAs
2017.04Psychometric 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 JPoster presented at American Academy of Neurology, April 2017. Neurology, 2017;88(16):P2.057View PublicationCNS/Neurology, Rare diseases, Genetic diseasesPsychometric evaluation and statistical analysis of COAs
2017.04Development 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 KPoster presented at North American Veterinary Dermatology Forum (NAVDF), April 2017Animal health, DermatologyCOA instrument development or modification, Qualitative patient-centered research and evaluation of COAs
2017.03Assessing Atopic Dermatitis Symptoms in Adolescents and Adults: Development of a Patient-Reported Symptom DiaryHall R, Gater A, Wells J, Chen L, Papacharalambous J, Cappelleri JC, Hsu M-APoster presented at American Academy of Dermatology Annual Meeting, March 2017Dermatology, Pediatric careQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2017.03Validation of two cancer care plan communication toolsStaunton H, Yagnik S, Williamson N, Spencer H, Kaur S, Bennett B, Donelson S, Jagun D, Goertz H, Stein APresented at ASCO Quality of Care Symposium, March 2017 Journal of Clinical Oncoogy, 2017;35(8):145View PublicationOncologyQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2017.02The Functional Impact of Movement Disorders Symptoms in Glucose Transporter Type 1 Deficiency Syndrome (Glut1 DS)Bowden A, Kilgariff S, Hall R, Brandabur M, Collins PPoster presented at International Symposium on Paediatric Movement Disorders, February 2017Endocrinology/Metabolic diseasesLiterature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs
2017.02Evaluating 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):4973View PublicationHematologyPatient preference research
2017Living with the burden of relapse in multiple myeloma from the patient and physician perspectiveHulin C, Hansen T, Heron L, Pughe R, Streetly M, Plate A, Perkins S, Morgan K, Tinel A, Rodrigues F, Ramasamy KLeukaemia Research 59 (2017) 75-84View PublicationOncologyTreatment pathways/burden of illness, Evidence synthesis/utility generation
2017Development and validation of the angiotensin-converting enzyme inhibitor (ACEI) induced angioedema investigator rating scale and proposed discharge criteriaBonner N, Panter C, Kimura A, Sinert R, Moellman J, Bernstein J ABMC Health Services Research, 2017;17:366View PublicationCardiovascularQualitative patient-centered research and evaluation of COAs, Psychometric evaluation and statistical analysis of COAs, COA instrument development or modification
2017Nivolumab 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 trialHarrington 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 JLancet Oncology, 2017;18(8): 1104-1115.View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2017Health-related quality of life results from the phase III CheckMate 067 studySchadendorf 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 GVEuropean Journal of Cancer, 2017;82: 80-91.View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2017Development and preliminary evidence of the psychometric properties of the GNE myopathy functional activity scaleMayhew J, Bonner N, Arbuckle R, Turnbull A, Bowden A, Skrinar AJournal of Comparative Effectiveness Research, 2017;7(4):381-395View PublicationMusculoskeletal diseases, Rare diseasesPsychometric evaluation and statistical analysis of COAs
2017The Humanistic Burden of Small Cell Lung Cancer (SCLC): A Systematic Review of Health-Related Quality of Life (HRQoL) LiteratureBennett B M, Wells J R, Panter C, Yuan Y, Penrod J RFront Pharmacol, 2017;8:339View PublicationOncologyLiterature and COA instrument reviews
2017HaemoPREF: Further evaluation of patient perception and preference for treatment in a real world settingBonanad S, Schulz M, Gordo A, Spurden D, Cicchetti M, Cappelleri JC, Tolley C, Staunton H, Brohan EHaemophilia, 2017;23:884-893View PublicationHematologyPsychometric evaluation and statistical analysis of COAs
2017Qualitative Assessment of the Symptoms and Impact of Pancreatic Exocrine Insufficiency (PEI) to Inform the Development of a Patient-Reported Outcome (PRO) InstrumentJohnson C D, Arbuckle R, Bonner N, Connett G, Dominguez-Munoz E, Levy P, Staab D, Williamson N, Lerch M MThe Patient, 2017;10(5): 615–628View PublicationEndocrinology/Metabolic diseasesQualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Literature and COA instrument reviews
2017Health-related quality of life in South African patients with pulmonary tuberculosisKastien-Hilka T, Rosenkranz B, Sinanovic E, Bennett B PLoS One, 2017;20;12(4):e0174605. doi: 10.1371/journal.pone.0174605. eCollection 2017View PublicationRespiratory diseasesPsychometric evaluation and statistical analysis of COAs
2017Development and content validation of a preliminary core set of patient- and caregiver-relevant outcomes for inclusion in a potential composite endpoint for Dravet SyndromeNabbout R, Auvin S, Chiron C, Irwin J, Mistry A, Williamson NEpilepsy & Behavior, 2017;78: 232-242View PublicationCNS/Neurology, Rare diseasesQualitative patient-centered research and evaluation of COAs
2017Psychometric validation of the dysmenorrhea daily diary (DysDD): a patient-reported outcome for dysmenorrheaNguyen A, Arbuckle R, Korver T, Chen F, Taylor B, Turnbull A, Norquist JQuality of Life Research, 2017;26(8):2041-2055View PublicationWomen's healthPsychometric evaluation and statistical analysis of COAs
2017Assessing the Comparability of Paper and Electronic Versions of the EORTC QOL Module for Head and Neck Cancer: A Qualitative StudyNorquist J, Chirovsky D, Munshi T, Tolley C, Panter C, Gater AJMIR Cancer, 2017;3(1):e7View PublicationOncologyQualitative patient-centered research and evaluation of COAs
2017Psychometric 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 FPatient, 2017;10:579-592View PublicationCardiovascularPsychometric evaluation and statistical analysis of COAs
2017Development and psychometric evaluation of an owner-completed measure of feline health and quality of lifeTatlock S, Gober M, Williamson N, Arbuckle RThe Veterinary Journal, 2017;228:22-32View PublicationAnimal healthQualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs
2017Psychometric Evaluation of a Treatment Acceptance Measure for Use in Patients Receiving Treatment via Subcutaneous InjectionTatlock S, Sanchez R, Grant L, Khan I, Manvelian G, Spertus JValue in Health, 2017;20(3):430-440View PublicationPsychometric evaluation and statistical analysis of COAs
2017Development and Psychometric Evaluation of the Self-Assessment of Psoriasis Symptoms (SAPS) – Clinical Trial and the SAPS – Real World Patient Reported OutcomesAmstrong AW, Banderas B, Foley C, Stokes J, Sundaram M, Shields ALJournal of Dermatological Treatment, 2017: 1-41.View PublicationDermatology, ImmunologyQualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs
2017Development of the Rheumatoid Arthritis Symptom Questionnaire (RASQ): a patient reported outcome scale for measuring symptoms of rheumatoid arthritisBanderas B, Skup M, Shields AL, Mazar I, Ganguli ACurrent Medical Research Opinion, 2017;33(9): 1643-1651.View PublicationMusculoskeletal diseases, ImmunologyQualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Literature and COA instrument reviews
2017Psychometric evaluation of the Rheumatoid Arthritis Symptom Questionnaire (RASQ) in an observational studyBanderas B, Skup M, Shields AL, Stokes J, Foley C, Ganguli ACurrent Medical Research Opinion, 2017;33(12): 2121-2128.View PublicationImmunology, Musculoskeletal diseasesPsychometric evaluation and statistical analysis of COAs
2017Diarrhea-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 equivalenceDelgado-Herrera L, Banderas B, Ojo O, Kothari R, Zeiher BPatient Related Outcome Measures, 2017;8: 83-95.View PublicationGastroenterologyCOA instrument development or modification, Qualitative patient-centered research and evaluation of COAs
2017Evaluation and performance of a newly developed patient-reported outcome instrument for diarrhea predominant irritable bowel syndrome in a clinical study populationDelgado-Herrera L, Lasch K, Zeiher B, Lembo AJ, Drossman DA, Banderas B, Lademacher C, Arbuckle RTherapeutic Advances in Gastroenterology, 2017;10(9): 673-687.View PublicationGastroenterologyPsychometric evaluation and statistical analysis of COAs
2017Effect 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 studyEngert A, Taylor F, Bennett B, Chen C, Cocks K, McDonald J, Mann E, Sacchi M, Cella DPresented at 59th American Society of Hematology (ASH) Annual Meeting and Exposition Blood, 2017;130,(1): 3441.View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2017Nivolumab versus investigator’s choice therapy among patients with human papillomavirus-associated squamous cell carcinoma of the head and neck: updated results from CheckMate 141Gillison 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 NFPresented at AHNS Annual MeetingOncologyPsychometric evaluation and statistical analysis of COAs
2017Development of a content-valid patient-reported measure to assess the statin intolerance experienceJacobson TA, Edelman SV, Galipeau N, Shields AL, Mallya UG, Koren A, Davidson MHThe Patient - Patient-Centered Outcomes Research, 2017;10(3): 321-334.View PublicationCardiovascularQualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Literature and COA instrument reviews
2017Health-related quality of life as a marker of treatment benefit with nivolumab in platinum-refractory patients with metastatic or unresectable urothelial carcinoma from CheckMate 275Necchi 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 ERPresented at American Society of Clinical Oncology Journal of Clinical Oncology, 2017;35(15): 4526-4526.View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2017Patient-reported outcomes in DNA mismatch repair deficient/ microsatellite instability-high metastatic colorectal cancer treated with nivolumab: CheckMate 142Overman M, Kamble S, Moss RA, Taylor F, Maglinte GA, Shaw JW, Cocks K, Mann E, Yip C, André TPresented at 19th World Congress on Gastrointestinal Cancer Annals of Oncology, 2017;28(3): III107-III108.View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2017Impacts of Glabellar Facial Lines - A Patient PerspectiveSolish N, Bertucci V, Hall S, Banderas, B, Foley C, Turner-Bowker DM, Shields AL, Chung C, Rubio RG, Carruthers JPoster presented at the 75th Annual American Academy of Dermatology (AAD) meeting. Orlando, Florida, USA, 2017DermatologyQualitative patient-centered research and evaluation of COAs
2017Evaluating the dimensionality of complex PROs using bifactor analysis within an exploratory structural equation modeling framework: an example using the Patient-reported Scar Evaluation QuestionnaireSen R, Pleil A, Coon C, Shields ALPoster presented at the ISOQOL, 2017Dermatology, Surgery anesthesiology and wound carePsychometric evaluation and statistical analysis of COAs
2016.12Treatment patterns and clinical practices of advanced (stage IIIB and IV) non-small cell lung cancer (NSCLC) in Europe – A structured literature reviewBrodowicz T, Niepel D, Booth E, Hernandez R, Braileanu G, Cawkwell M, Amelio JPoster presented at the IASLC Conference on Lung Cancer, December 2016OncologyLiterature/landscape reviews
2016.12Patient subgroup analyses of Quality of Life Outcomes in Checkmate 205. A Phase 2 study of Nivolumab in patients with Classical Hodgkin LymphomaEngert A, Taylor F, Bennett B, Hirji I, Cocks K, McDonald J, Mann E, Kato K, Cella DPoster presented at ASH, December 2016View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2016.11Challenges in the health economics of acute pain: A rapid review of the literatureBraileanu G, Johnson BC, Ashraf S, Borrill J, Hirst MPoster presented at ISPOR, November 2016. Value in Health vol. 19,7,PA366View PublicationCNS/NeurologyLiterature/landscape reviews
2016.11Structured review of health economic models in asthmaEnstone A, Price G, Viejo I, Dunlop WPoster presented at ISPOR, November 2016. Value in Health vol. 19,7,PA372View PublicationRespiratory diseasesLiterature/landscape reviews, Economic models
2016.11Network meta-analysis to evaluate the efficacy of ixekizumab in the treatment of moderate-to-severe psoriasisHartz S, Walzer S, Dutronc Y, Himatlal Kiri S, Schacht A, Dakin HPoster presented at ISPOR, November 2016. Value in Health vol. 19,7,PA576View PublicationDermatology, ImmunologyLiterature/landscape reviews, Evidence synthesis/utility generation
2016.11The societal and humanistic burden of small cell lung cancer (SCLC): A systematic review of societal impact and health-related quality of life (HRQoL) literatureEnstone A, Panter C, Greaney MH, Bennett B, Penrod JR, Yuan YPoster presented at ISPOR, November 2016. Value in Health vol. 19,7,PA748View PublicationOncologyLiterature/landscape reviews
2016.11Systematic review of the caregiver burden in melanoma and renal cell carcinoma within EuropeFarrington E, Zagorska A, Burnett JPoster presented at the Society for Melanoma Research (SMR) congress, November 2016Oncology, NephrologyLiterature/landscape reviews, Treatment pathways/burden of illness
2016.11“I Am Always in Pain Somewhere”: Continuing Unmet Need in Rheumatoid ArthritisTaylor P, Alten R, Gomez-Reino JJ, Caporali R, Bertin P, Grant L, Brohan E, Wells J, Vasilescu R, Tarallo MPoster 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-arthritisView PublicationMusculoskeletal diseases, ImmunologyQualitative patient-centered research and evaluation of COAs
2016.11Measuring multiple medication adherence - which measure when?Pednekar P, Agh T, Malmenas M, Bennett BWorkshop presented at ISPOR, November 2016Literature and COA instrument reviews
2016.11Mode 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 MPoster 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 PublicationMusculoskeletal diseases, ImmunologyPatient preference research
2016.11Further validation of the haemopref in a real-world settingTolley C, Staunton H, Brohan E, Spurden D, Cicchetti M, Cappelleri JCPoster presented at ISPOR, November 2016. Value in Health, 2016;19(7):PA383-A384View PublicationHematologyPsychometric evaluation and statistical analysis of COAs
2016.11Development 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 APoster presented ISPOR, November 2016. Value in Health, 2016;19(7): PA386.View PublicationOncologyQualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Literature and COA instrument reviews
2016.11Developing a small cell lung cancer conceptual model to inform treatment outcome and assessment strategy decisions in clinical researchOjo O, Shields AL, Morrissey L, Love E, Ollis S, Halling K, Rudell KPoster presented ISPOR, November 2016. Value in Health, 2016;19(7): PA747.View PublicationOncologyLiterature and COA instrument reviews
2016.11Psychometric analyses of clinical outcome assessment (COA) questionnaires designed to evaluate satisfaction with pharmacological stress agents (PSAS) used in echocardiographySpalding J, Hudgens S, Litcher-Kelly L, Shields A, Kitt T, Ojo O, Kristy R, Lee E, Mathias A, Morrissey L, Houle CPoster presented ISPOR, November 2016. Value in Health, 2016;19(7): PA358.View PublicationCardiovascularPsychometric evaluation and statistical analysis of COAs
2016.1Creating clinical outcome assessments on Electronic platforms from the beginning: challenges, consideration and advantagesArbuckle R, Kilgariff S, Hall R, O’Donohoe PPoster presented at ISOQOL, October 2016Literature and COA instrument reviews, COA instrument development or modification
2016.1Evidence for the content validity of the EORTC QLQ-C30: Review of existing dataCocks K, Tolley C, Grant L, Wheelwright S, Tomaszewski K, Groenvold M, Bottomley A, Fitzsimmons D, Velikova G, Aaronson N, Johnson CPodium presentation at ISOQOL, October 2016OncologyLiterature and COA instrument reviews
2016.1Assessing the humanistic burden of menopausal symptoms and estrogen-progestogen therapy side effects among postmenopausal women in the USWilliamson N, Tatlock S, Abraham L, Bushmakin A, Moffatt MPoster presented at North American Menopause Society conference, October 2016View PublicationWomen's healthPsychometric evaluation and statistical analysis of COAs
2016.09Towards 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 NPoster presented at European Congress on Epileptology, September 2016CNS/NeurologyQualitative patient-centered research and evaluation of COAs
2016.09Development of a new patient reported outcomes (PRO) measure on the impact of nighttime urination (INTU) in patients with nocturia – psychometric evaluationBennett J, Khalaf K, Banderas B, Abrams S, Cheng L, Fein SPresentation at AUGS PFD Week 2016, Denver, USA, September 27-October 1 2016Urology/UrogenitalPsychometric evaluation and statistical analysis of COAs
2016.07Psychometric evaluation of the Self-Assessment of Psoriasis Symptoms (SAPS)-Clinical Trial and the SAPS-Real World Patient-reported outcomesArmstrong A, Banderas B, Sundaram M, Foley C, Ojo F, Shields ALPoster presented at the 5th Congress of the Psoriasis International Network (PSO 2016), Paris, France, July 7th-9th, 2016View PublicationDermatology, ImmunologyPsychometric evaluation and statistical analysis of COAs
2016.06A structured review of health utility measures and elicitation in advanced/metastatic breast cancerHao Y, Wolfram V, Cook JClinicoEconomics and Outcomes Research, vol. 2016:8, 293—303. June 2016View PublicationOncologyLiterature/landscape reviews, Evidence synthesis/utility generation
2016.06Health outcome assessment in chronic thromboembolic pulmonary arterial hypertension patients treated with riociguat: 2-year results from the CHEST-2 long-term extension studyBonner N, Brockmann B, Busse D, de la Orden M, Gater A, Mathai SC, Minai OA, Teal SPoster presented at PHA Conference, June 2016CardiovascularPsychometric evaluation and statistical analysis of COAs
2016.06Health outcome assessment in pulmonary arterial hypertension patients treated with riociguat: 2-year results from the PATENT-2 long-term extension studyBonner N, Brockmann B, Busse D, de la Orden M, Gater A, Mathai SC, Minai OA, Teal SPoster presented at PHA Conference, June 2016 American Journal of Respiratory and Critical Care Medicine, 2015;191:A4777View PublicationCardiovascularPsychometric evaluation and statistical analysis of COAs
2016.06Quality of life in patients with advanced renal cell carcinoma given nivolumab versus everolimus in CheckMate 025: a randomised, open-label, phase 3 trialCella D, Grünwald V, Nathan P, Doan J, Dastani H, Taylor F, Bennett BM, DeRosa M, Berry S, Broglio K, Berghorn E, Motzer RJThe Lancet Oncology, 17(7):994-1003 View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2016.06A patient-centred approach to developing patient-reported outcome measures (PROMs): Patients as research partners, not just participantsPanter C, Williamson N, Tatlock S, Hall R, Wells J, Gater APoster presented at PROMs Conference, June 2016Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Literature and COA instrument reviews
2016.06Patient 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 MPoster presentation at the DIA 2016 52nd Annual Meeting, Philadelphia, PA, June 26-30 2016Immunology, Musculoskeletal diseasesPatient preference research
2016.06The things kids say:  Clinical outcome assessments in pediatric clinical trialsJackson C, Treem W, Turner-Bowker DM, Calarco G, Paty J, Mulberg AForum presentation at the DIA 2016 52nd Annual Meeting, Philadelphia, PA, June 26-30 2016Pediatric careQualitative patient-centered research and evaluation of COAs, Literature and COA instrument reviews
2016.05Web-based budget impact and pricing scenarios planning model: Example from the United KingdomRousseau B, Johnson B, Topachevskyi O, Volovyk APoster presented at ISPOR, May 2016. Value in Health vol. 19,3,PA79View PublicationEconomic models
2016.05Challenges and solutions associated with patient-centered outcomes in rare diseasesBonner N, Panter C, Spencer H, Braid J, Bennett BPoster presented at ISPOR, May 2016. Value in Health, 2016;19(3):PA296-A297View PublicationRare diseasesLiterature and COA instrument reviews
2016.05Development and evaluation of a crosswalk between the EQ-5D-5L and menopause-specific quality of life (MENQOL) questionnaire in postmenopausal womenBushmakin AG, Tatlock S, Williamson N, Moffatt M, Arbuckle R, Abraham L, Coon CPoster presented at ISPOR, May 2016. Value in Health, 2016;19(3):PA178View PublicationWomen's healthPsychometric evaluation and statistical analysis of COAs
2016.05Exploring the qualitative experience of chest congestion with children and adults to develop patient-reported outcome items to self-assess symptoms of the common coldGrant L, Marshall C, Burrows K, Khammo N, Albrecht H, Arbuckle R, Shea TPoster presented at ISPOR, May 2016. Value in Health, 2016;19(3):PA117View PublicationRespiratory diseases, Pediatric careQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2016.05What 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 RPoster presented at ATS International Conference, May 2016 American Journal of Respiratory and Critical Care Medicine, 2016;193:A3814View PublicationRespiratory diseases, Pediatric careQualitative patient-centered research and evaluation of COAs
2016.05Evaluation of the psychometric properties of two electronic daily diaries developed to assess breast pain/tenderness and vaginal bleeding/spotting in postmenopausal women on hormone therapyTatlock S, Abraham L, Bushmakin AG, Moffatt M, Williamson N, Coon C, Arbuckle RPoster presented at ISPOR, May 2016. Value in Health, 2016;19(3):PA96View PublicationWomen's healthPsychometric evaluation and statistical analysis of COAs
2016.05Overall 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 carcinomaTaylor F, Dastani H, Bennett B, DeRosa M, Berghorn E, Justin DPoster presented at ISPOR, May 2016. Value in Health, 2016;19(3):PA167View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2016.05Empowering patient populations with physical or cognitive limitations through electronic clinical outcome assessments (eCOAs)Tolley C, Garner K, Abel JWorkshop presented at ISPOR, May 2016Literature and COA instrument reviews
2016.05Development and content validation of a patient-reported outcome measure to evaluate statin intolerance in the real-worldJacobson TA, Edelman SV, Davidson, M, Galipeau N, Shields AL, Mallya UG, Koren APoster presented at ISPOR, May 2016. Value in Health, 2016;19(3) PA52.View PublicationCardiovascularQualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Literature and COA instrument reviews
2016.05Evaluating the clinical meaning of the Hidradenitis Suppurativa Clinical Response (HiSCR)Kimball AB, Sundaram M, Sen R, Naijun C, Shields AL, Gu Y, Okun MMPoster presented at the 74th Annual Meeting of the American Academy of Dermatology (AAD), Washington DC, USAView PublicationDermatology, ImmunologyPsychometric evaluation and statistical analysis of COAs
2016.05Simultaneous development of PRO questionnaires for use in clinical trials and 'real-world' situationsShields A, Stokes J, Foley C, Banderas B, Sundaram MPoster presented at ISPOR, May 2016. Value in Health, 2016;19(3): PA96-A97.View PublicationDermatology, ImmunologyCOA instrument development or modification, Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, Psychometric evaluation and statistical analysis of COAs
2016.05Exploring and leveraging known resources to support pediatric clinical outcomes assessment (COA) developmentTurner-Bowker D, Krohe M, Banderas CAWorkshop presented at ISPOR, May 2016.Pediatric careCOA instrument development or modification, Literature and COA instrument reviews
2016.04A qualitative assessment of key symptoms associated with the progression from RRMS to SPMS by physicians and patientsZiemssen T, Bennett B, Tolley C, Kilgariff S, Simsek D, Lahoz R, Verdun Di Cantogno EPoster presented at American Academy of Neurology, April 2016 Neurology, 2016;86(16):P2.156View PublicationCNS/Neurology, ImmunologyQualitative patient-centered research and evaluation of COAs
2016.02Taking the ‘burden’ out of caregiver burdenGrant L, Kilgariff S, Hall R, Braid J, Bennett BPharmaphorum.comView PublicationLiterature and COA instrument reviews
2016.01The Quality of Survival (QoS): A concept framework to assist communication and decision-making about cancer careFallowfield L, Nadler E, Greaney M, Gater A, Subar M, Orsini L, Lyman GHPresented at the ASCO Cancer Survivorship meeting, January 2016View PublicationOncologyLiterature/landscape reviews, Treatment pathways/burden of illness
2016Adherence to topical therapies in actinic keratosis: A literature reviewFoley P, Stockfleth E, Peris K, Basset-Seguin N, Cerio R, Sanches JA, Guillen C, Farrington E, Lebwohl MJournal of Dermatological Treatment, 27:6, 538-545 (2016)View PublicationDermatologyLiterature/landscape reviews
2016BEACON: A summary framework to overcome potential reimbursement hurdlesDunlop W, Mullins D, Pirk O, Goeree R, Postma M, Enstone A, Heron LPharmacoEconomics, 34, 1051–1065 (2016)View PublicationLiterature/landscape reviews, HTA/reimbursement, Evidence synthesis/utility generation
2016FP/FORM versus FP/SAL within clinical practice: An updated budget impact analysis in asthmaFarrington E, Saunders A, Heron L, Dunlop WAdvances in Therapy, 33, 794–806 (2016)View PublicationRespiratory diseasesEconomic models
2016Treatment patterns of advanced malignant melanoma (stage III-IV) - A review of current standards in EuropeHarries M, Heron L, Malvehy J, Lebbe C et alEur J Cancer 60: 179-189View PublicationOncologyLiterature/landscape reviews, Treatment pathways/burden of illness
2016How to Evaluate Health-Related Quality of Life and Its Association with Medication Adherence in Pulmonary Tuberculosis – Designing a Prospective Observational Study in South AfricaKastein-Hilka T, Rosenkranz B, Bennett B, Sinanovic E, Schwenkglenks MFrontiers in Pharmacology, 2016;7:125, doi: 10.3389/fphar.2016.00125View PublicationRespiratory diseasesPsychometric evaluation and statistical analysis of COAs
2016Clinical Trial Patient-Reported Outcomes Data: Going Beyond the Label in OncologyHao Y, Krohe M, Yaworsky A, Shields AL, Mazar I, Foley C, Globe DClinical Therapeutics, 2016;38(4): 811-20.View PublicationOncologyCOA instrument development or modification
2016Practical considerations for the use of clinical outcome assessments (COAs) in pediatric clinical research: Examples from pediatric gastroenterologyKovacs S, Turner-Bowker DM, Calarco G, Mulberg A, Paty JTherapeutic Innovation & Regulatory Science, 2016;50(1): 37-43.View PublicationGastroenterology, Pediatric careLiterature and COA instrument reviews
2016Patient-reported outcomes in advanced breast cancer: A review of industry sponsored clinical trialsKrohe M, Hao Y, Lamoureux R, Galipeau N, Globe D, Foley C, Mazar I, Solomon J, Shields ALBreast Cancer: Basic and Clinical Research, 2016;10: 93-1View PublicationOncologyLiterature and COA instrument reviews
2016Patient preference for once-weekly dosing in type 2 diabetes mellitus in JapanSen R, Shields AL, Atsuda KJournal of Health Economics and Outcomes Research, 2016;4(1): 55-66.View PublicationEndocrinology/Metabolic diseasesPatient preference research
2016Patient-reported outcomes for oncology product labeling in the US: developing a rationale and navigating early challengesShields AL, Hao Y, Krohe M, Yaworsky A, Mazar I, Foley C, Globe DG, Mehmud FAmerican Health & Drug Benefits, 2016;9(4): 188-197.View PublicationOncologyLiterature and COA instrument reviews
2016Patient-reported outcomes in Oncology Drug Labeling in the United States: A Framework for Navigating Early ChallengesShields AL, Hao Y, Krohe M, Yaworsky A, Mazar I, Foley C, Globe DG, Mehmud FAmerican Health & Drug Benefits, 2016;9(4): 188-197. View PublicationOncologyLiterature and COA instrument reviews
2016International 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 MTQuality of Life Research, 2016;25(Supp 1):302.5View PublicationOncology, Women's healthCOA instrument development or modification, Psychometric evaluation and statistical analysis of COAs
2016Quality 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 studyCella 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):4549View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2016Evidence for the content validity of the EORTC QLQ-C30: Review of existing dataCocks K, Tolley C, Grant L, Wheelwright S, Tomaszewski K, Groenvold M, Bottomley A, Fitzsimmons D, Velikova G, Aaronson N, Johnson CQuality of Life Research, 2016;25(1):ab303.4OncologyLiterature and COA instrument reviews
2016Cultural adaptation: translatability assessment and linguistic validation of the patient-reported outcome instrument for irritable bowel syndrome with diarrheaDelgado-Herrera L, Lasch, K, Popielnicki A, Nishida A, Arbuckle R, Banderas B, Zentner S, Gagainis I, Zeiher BPatient Related Outcome Measures, 2016;7:81–92View PublicationGastroenterologyQualitative patient-centered research and evaluation of COAs
2016Assessing asthma symptoms in adolescents and adults: Qualitative research supporting development of the asthma daily symptom diaryGater 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 GroupValue in Health, 2016;9:440-450View PublicationRespiratory diseases, Pediatric careQualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Literature and COA instrument reviews
2016Lung 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 057Gralla RJ, Spigel DR, Bennett B, Taylor F, Penrod JR, DeRosa M, Reck MPoster presented at ASCO, Jun 2016. Journal of Clinical Oncology, 2016;34(15):9031View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2016Health-related quality of life and its association with medication adherence in active pulmonary tuberculosis - a systematic review of global literature with focus on South AfricaKastein-Hilka T, Abulfathi A, Rosenkranz B, Bennett B, Schwenkglenks M, Sinanovic EHealth and Quality of Life Outcomes, 2016;14:42, https://doi.org/10.1186/s12955-016-0442-6View PublicationRespiratory diseasesLiterature and COA instrument reviews
2016The Humanistic Burden of Small Cell Lung Cancer: A Systematic Review of the Health-Related Quality of Life LiteraturePanter C, Bennett BM, Wells J, Yuan Y, Penrod JRPoster presented at ESMO, Oct 2016. Annals of Oncology, 2016;27(Supp 6)VI495View PublicationOncologyLiterature and COA instrument reviews
2016What Outcomes are Important for Gout Patients? In-Depth Qualitative Research into the Gout Patient Experience to Determine Optimal Endpoints for Evaluating Therapeutic InterventionsTatlock S, Rudell K, Panter C, Arbuckle R, Harrold L, Taylor W, Symonds TPatient, 2016;10:65-79View PublicationMusculoskeletal diseasesQualitative patient-centered research and evaluation of COAs
2016Functional 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 SPoster presented as the Seventh Annual PRO Consortium Workshop – Silver Spring, MD – April 27-28, 2016View PublicationGastroenterologyCOA instrument development or modification
2016Patient-reported preferences for oral versus IV administration for the treatment of cancer: a review of the literatureEek D, Krohe M, Mazar I, Horsfield A, Pompilus F, Friebe R, Shields ALPatient Preference and Adherence, 2016;10: 1609-1621.View PublicationOncologyLiterature and COA instrument reviews
2016Cognitive testing of an electronic version of the Faces Pain Scale-Revised with pediatric and adolescent sickle cell patientsGupta N, Naegeli AN, Turner-Bowker DM, Flood EM, Heath LE, Mays SM, Dampier CPatient, 2016;9(5): 433-43.View PublicationHematology, Pediatric careQualitative patient-centered research and evaluation of COAs
2016Patient-reported outcomes in advanced breast cancer: inside the label and approval documentsHao Y, Krohe M, Mazar I, Galipeau N, Foley C, Globe D, Turner-Bowker D, Shields ALExpert Review of Quality of Life in Cancer Care, 2016;1(3): 197-205.View PublicationOncologyLiterature and COA instrument reviews
2016Psychometric evaluation of clinical outcomes assessments in a phase II trialHuang VW, Banderas B, Sen RPoster presented at ISPOR, November 2016. Value in Health, 2016;19(7): PA746View PublicationPsychometric evaluation and statistical analysis of COAs
2016Responder analyses of droxidopa in patients with symptomatic neurogenic orthostatic hypotensionRowse GJ, Hewitt A, Shields AL, Freeman R, Kaufmann HPoster presented at the 68th annual meeting of The American Academy of Neurology Annual Meeting in Vancouver, Canada Neurology, 2016; 86(16): P5.130.View PublicationCNS/NeurologyPsychometric evaluation and statistical analysis of COAs
2016Responder analyses of droxidopa in patients with symptomatic neurogenic orthostatic hypotensionRowse GJ, Hewitt A, Shields AL, Freeman R, Kaufmann HMovement Disorders, 2016;30(10): e7.View PublicationCNS/NeurologyPsychometric evaluation and statistical analysis of COAs
2016Development of a symptom-based patient-reported outcome instrument for functional dyspepsia: A preliminary conceptual model and an evaluation of the adequacy of existing instrumentsTaylor 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 GroupThe Patient-Patient Centered Outcomes Research, 2016;9: 409.View PublicationGastroenterologyQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2016The Use of Patient-Reported Outcomes in Advanced Breast Cancer Clinical Trials: A Review of the Published LiteratureTurner-Bowker D, Hao Y, Foley C, Galipeau N, Mazar I, Krohe M, Globe D, Shields ALCurrent Medical Research and Opinion, 2016;32(10): 1709-1717.View PublicationOncologyLiterature and COA instrument reviews
2016Psychometric evaluation of a new patient-reported outcome (PRO) symptom diary for varicose veins: VVSymQ® instrumentWright DD, Paty J, Turner-Bowker DM, Bradbury APatient, 2016;9: 335–348.View PublicationCardiovascularPsychometric evaluation and statistical analysis of COAs
2016Development 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 SJ Neurol, 2016;263(10): 1969-83.View PublicationCNS/Neurology, ImmunologyQualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs
2015.12Content validation and modification of the Treatment Satisfaction Questionnaire for Medication (TSQM) for use in breast cancerDeBusk K, Maddux L, Turner-Bowker DM, Krupnick R, Skolas K, Patel S, Petersen JPoster presentation at the San Antonio Breast Cancer Symposium, San Antonio, TX, December 8-12, 2015 Cancer Res, 2016;76(4): P4-11-14.View PublicationOncologyCOA instrument development or modification
2015.11The 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 satisfactionNicolai J, Torvinen S, Howard DJ, Miles R, Greaney MH, Comberiati U, Plich APoster presented at ISPOR, November 2015. Value in Health vol. 18,7,PA497View PublicationRespiratory diseases, Medical devicesEconomic models
2015.11The 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 UKNicolai J, Torvinen S, Miles R, Greaney MH, Howard DJ, Plich APoster presented at ISPOR, November 2015. Value in Health vol. 18,7,PA500View PublicationRespiratory diseases, Medical devicesEvidence synthesis/utility generation, Treatment pathways/burden of illness
2015.11Clinician-reported insights of insulin degludec use in Germany and four supporting European countriesSeitz L, Lopes S, Vandebrouck T, Parekh WA, Canty E, Robinson A, Ohlson LPoster presented at ISPOR, November 2015. Value in Health vol. 18,7,PA621View PublicationEndocrinology/Metabolic diseases, ImmunologyEvidence synthesis/utility generation
2015.11Societal burden and impact on health related quality of life (HRQoL) of non-small cell lung cancer (NSCLC) in EuropeEnstone A, Panter C, Manley Daumont M, Miles RPoster presented at ISPOR, November 2015. Value in Health vol. 18,7,PA690View PublicationOncologyTreatment pathways/burden of illness
2015.11Systematic review of the caregiver burden in melanoma and renal cell carcinoma within EuropeFarrington E, Zagorska A, Burnett JPoster presented at the Society for Melanoma Research (SMR) congress, 2015Oncology, NephrologyLiterature/landscape reviews, Treatment pathways/burden of illness
2015.11Development of evidence packages for regulatory and reimbursement submissions in rare diseases: real-world examplesBonner N, Bowden A, Bal V, Kilburg AWorkshop presented at ISPOR, November 2015Rare diseasesLiterature and COA instrument reviews
2015.11Development of patient-centered outcomes in rare diseasesBonner N, MacCulloch A, Bennett BPoster presented at World Orphan Drug Congress, November 2015Rare diseasesLiterature and COA instrument reviews, COA instrument development or modification
2015.11Health-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 CPoster presented at ISPOR, November 2015. Value in Health, 2015;18(7):PA472View PublicationOncology, Men's healthQualitative patient-centered research and evaluation of COAs
2015.11Assessment of patient-reported health status in pulmonary arterial hypertension patients treated with riociguat: 2-year results from the patent-2 extension studyMathai SC, Bonner N, Minai OA, Busse D, Brockmann B, Teal S, Gater A, de la Orden MPoster presented at ISPOR, November 2015. Value in Health, 2015;18(7)PA398View PublicationCardiovascularPsychometric evaluation and statistical analysis of COAs
2015.11Assessment of patient-reported health status in chronic thromboembolic pulmonary arterial hypertension patients treated with riociguat: 2-year results from the chest-2 extension studyMinai OA, Bonner N, Mathai SC, Busse D, Brockmann B, Teal S, Gater A, de la Orden MPoster presented at ISPOR, November 2015. Value in Health, 2015;18(7):PA398-A399View PublicationCardiovascularPsychometric evaluation and statistical analysis of COAs
2015.11Qualitative 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/caregiversMulatero C, Lal R, Jewitt K, Tolley C, Wells J, Arbuckle R, Lloyd A, Brazier J, Devlin NPoster presented at ISPOR, November 2015. Value in Health, 2015;18(7):PA469View PublicationOncologyQualitative patient-centered research and evaluation of COAs
2015.11Translatability 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 SPoster presented at ISPOR, November 2015. Value in Health, 2015;18(7):PA630View PublicationGastroenterologyCOA instrument development or modification
2015.11Equivalence of paper and electronic administration of patient reported outcomes: a comparison in psoriatic arthritisCeleste Elash CA, Tiplady B, Turner-Bowker DM, Cline J, DeRosa M, Scanlon MPodium presentation at ISPOR, November 2015. Value in Health, 2015;18(7): PA342.View PublicationDermatology, Immunology, Musculoskeletal diseasesCOA instrument development or modification, Psychometric evaluation and statistical analysis of COAs
2015.11Health-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 066Long GV, Taylor F, Gilloteau I, Dastani H, DeRosa M, Abernethy APPresented at the Society for Melanoma Research (SMR) 2015 Congress, San Francisco, CA, 18-21 November 2015 OncologyPsychometric evaluation and statistical analysis of COAs
2015.11Telephone versus face-to-face interviews for patient-reported outcome instrument developmentMazar I, Lamoureux R, Ojo O, Kevane G, Banderas B, Stokes J, Shields APoster presented at ISPOR, November 2015. Value in Health, 2015;18(7): PA718.View PublicationLiterature and COA instrument reviews
2015.11Patient reported outcomes from a phase 3 study of nivolumab alone or combined with ipilimumab (IPI) versus IPI in patients with advanced melanoma: CheckMate 067Schadendorf D, Long GV, Larkin J, Wolchok J, Hodi S, Chiarion-Sileni V, Taylor F, Gilloteau I, Dastani HB, Walker D, Rollin L, Abernethy APPresented at the Society for Melanoma Research (SMR) 2015 Congress, San Francisco, CA, 18-21 November 2015 OncologyPsychometric evaluation and statistical analysis of COAs
2015.1Developing and evaluating electronic clinical outcome assessments (eCOAs) for use in patient populations with substantial physical or cognitive limitationsTolley CPoster presented at eCOA Forum Scientific Sessions, October 2015CNS/Neurology, Musculoskeletal diseases, Pediatric careLiterature and COA instrument reviews, COA instrument development or modification
2015.1Digital methodologies in the development of clinical outcome assessmentsTolley C, Gater A, Marshall C, Dickie G, Kilgariff SPoster presented at ISOQOL, October 2015Literature and COA instrument reviews, COA instrument development or modification
2015.1Developing tools for use in clinical practice - a methodological approachTolley C, Hall R, Mills K, Bennett BPoster presented at ISOQOL, October 2015Literature and COA instrument reviews, COA instrument development or modification
2015.1Content development of patient-reported outcome instruments for the measurement of the primary signs and symptoms chronic plaque psoriasisArmstrong A, Sundaram M, Foley C, Pompilus F, Stokes J, Shields APoster presented at ISOQOL, October 2015Dermatology, ImmunologyCOA instrument development or modification
2015.09Quality 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 GHPoster presented at the European Cancer Congress, September 2015View PublicationOncologyLiterature/landscape reviews, Treatment pathways/burden of illness
2015.09Evaluation of disease-related symptoms in patients with advanced squamous non-small cell lung cancer treated with nivolumab or docetaxelGralla RJ, Coon C, Taylor F, Penrod JR, DeRosa M, Dastani H, Orsini L, Reck MOral presentation presented at: World Conference on Lung Cancer, Denver, USA, 6-9 September 2015OncologyPsychometric evaluation and statistical analysis of COAs
2015.09Evaluation of overall health status in patients with advanced squamous non-small cell lung cancer treated with nivolumab or docetaxel in CheckMate 017Reck M, Coon C, Taylor F, DeRosa M, Penrod JR, Dastani H, Orsini L, Gralla ROral presentation presented at European Cancer Congress, Vienna, Austria, 25-29 September 2015 Annals of Onocology, 2015;26(SUPPLEMENT 9):IX125.View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2015.07Development of a Patient-Reported Outcomes Instrument for the Measurement of Treatment Satisfaction in Plaque PsoriasisArmstrong 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, ImmunologyCOA instrument development or modification
2015.06Development 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 MPoster presented at European Pancreatic Club, Spain, June 2015Endocrinology/Metabolic diseasesCOA instrument development or modification
2015.06Psychometric 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 CPoster presented at EuroHeartCare Conference, June 2015 European Journal of Cardiovascular Nursing, 2015;14: S75-S76CardiovascularPsychometric evaluation and statistical analysis of COAs
2015.06Development of a patient-reported outcomes instrument for the measurement of treatment satisfaction in plaque psoriasisArmstrong AW, Sundaram M, Foley C, Iovin R, Pompilus F, Stokes J, Shields ALPoster presented at the 23rd World Congress of Dermatology, Vancouver, Canada, 8-13 June 2015View PublicationDermatology, ImmunologyCOA instrument development or modification
2015.05Development and validation of the angiotensin-converting enzyme inhibitor (ACEI) induced angioedema investigator rating scale and proposed discharge criteriaBonner N, Kimura A, Panter C, Sinert R, Moellman JJ, Bernstein JAPoster presented at ISPOR, May 2015. Value in Health, 2015;18(3):PA28View PublicationAllergiesQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2015.05Measuring the symptoms and impacts of endometriosis: psychometric validation of the Endometriosis Symptom Diary and Endometriosis Impact ScaleGater A, Coon CD, Wichmann K, Hartisch C, Filonenko A, Gerlinger CPoster presented ISPOR, May 2015 Value in Health, 2015;18(3):PA26View PublicationWomen's healthPsychometric evaluation and statistical analysis of COAs
2015.05Development, scoring and use of a patient questionnaire to measure the practical patient experience within oncology clinical trialsManson S, Bonner N, Bennett B, Dewit O, Thomas GPoster presented at ASCO, May 2015. Journal of Clinical Oncology, 2015;33(15): 10.1200/jco.2015.33.15_suppl.e20567View PublicationOncologyLiterature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2015.05Health Outcome Assessment in Chronic Thromboembolic Pulmonary Arterial Hypertension Patients Treated with Riociguat: 2-Year Results from the CHEST-2 Long Term Extension StudyMinai OA, Bonner N, Odufowora-Sita O, Mathai SC, Busse D, Brockman B, Teal S, Alston T, Joish V, Gater APoster presented at American Thoracic Society International Conference May 2015 American Journal of Respiratory and Critical Care Medicine, 2015;191:A4848View PublicationCardiovascularPsychometric evaluation and statistical analysis of COAs
2015.05Health Outcome Assessment in Pulmonary Arterial Hypertension Patients Treated with Riociguat: 2-Year Results from the PATENT-2 Long Term Extension StudyMathai SC, Odufowora-Sita O, Minai OA, Busse D, Brockman B, Teal S, Alston T, Joish V, Gater APoster presented at American Thoracic Society International Conference, May 2015 American Journal of Respiratory and Critical Care Medicine, 2015;191:A4777View PublicationCardiovascularPsychometric evaluation and statistical analysis of COAs
2015.05Effect 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 CPoster presented at ASCO, June 2015. Journal of Clinical Oncology, 2015;33(15): 9029-9029.View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2015.05Measuring disease specific impact and symptoms among patients with hidradenitis suppurativaKimball A, Sundaram M, Mathias A, Foley C, Shields ALPoster presented at ISPOR, May 2015. Value in Health, 2015;18(3): PA183-A184.View PublicationDermatologyLiterature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs
2015.05How many subjects are enough for symptom-focused concept elicitation studies? A retrospective analysis of saturation across twenty-six studiesLamoureux R, Galipeau N, Yaworsky A, Stokes J, Shields ALPoster presented at ISPOR, May 2015. Value in Health, 2015;18(3): PA33.View PublicationQualitative patient-centered research and evaluation of COAs
2015.05Effect 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 APPoster presented at ASCO, June 2015. Annals of Oncology, 2015;26(6): VI28.View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2015.04Patient reported burden of asthma on resource use and productivity across 11 countries in EuropeFletcher M, Jha A, Dunlop W, Heron L, Wolfram V, Van der Molen T, Price DAdv Ther. 2015 Apr;32(4):370-80View PublicationRespiratory diseasesTreatment pathways/burden of illness
2015.04The Asthma Working Group: On the Path to SuccessNelsen L, Gater A, Papadopoulos EWorkshop presented at Annual Patient-Reported Outcome Consortium Workshop, April 2015View PublicationRespiratory diseasesQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2015.03Assessing the patient-reported impact of endometriosis: Development of the Endometriosis Symptom Diary and Endometriosis Impact ScaleGater A, Seitz C, Gerlinger C, Moore A, Hartisch C, Wichmann KPoster presented at Society for Reproductive Investigation Annual Meeting March 2015View PublicationWomen's healthLiterature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs
2015Alcohol dependence, co-occurring conditions and attributable burdenOdlaug BL, Gual A, DeCourcy J, Perry R, Pike J, Heron L, Rehm JAlcohol and Alcoholism, vol. 51, 2, 201–209 (2016)View PublicationAddictionTreatment pathways/burden of illness
2015Elicitation of health state utilities associated with varying severities of flare in systemic lupus erythematosusHartz S, Liu-Leage S, Paget M, Pollard C, Cook J, Enstone AHealth and Quality of Life Outcomes, 13:66 (2015)View PublicationImmunologyEvidence synthesis/utility generation
2015Development of a conceptual model evaluating the humanistic and economic burden of Crohn’s disease: Implications for patient-reported outcomes measurement and economic evaluationGater A, Kitchen H, Heron L, Pollard C, Håkan-Bloch J, Højbjerre L, Bekker Hansen B, Strandberg-Larsen MExpert Rev Pharmacoecon Outcomes Res 2015, 15(4):643-56View PublicationGastroenterology, ImmunologyLiterature/landscape reviews, Treatment pathways/burden of illness
2015Time to deterioration (TTD) in health-related quality o flife (HRQoL) with carfilzomib plus dexamethasone (Kd56) versus bortezomib plus dexamethasone (Vd) in the ENDEAVOR trailWeisel K, Ludwig H, Dimopoulos M, Kaiser M, Hajek R, Mikhael J, Cocks K, Panjabi SJournal of Clinical Oncology, 31(15), e20011View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2015Simeprevir 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 studiesScott J, Gilles L, Fu M, Brohan E, Panter C, Arbuckle R, Jessner W, Beumont MJournal of Viral Hepatology, 2015;22(8):639-650View PublicationInfectious diseasesPsychometric evaluation and statistical analysis of COAs
2015Using Classical Test Theory, Item Response Theory, and Rasch Measurement Theory to Evaluate Patient-Reported Outcome Measures: A Comparison of Worked ExamplesPetrillo J, Cano SJ, McLeod LD, Coon CDValue in Health, 2015;18(1): 25-34.View PublicationEndocrinology/Metabolic diseases, OphthalmologyPsychometric evaluation and statistical analysis of COAs
2015Patient-reported outcomes for US oncology labeling: review and discussion of score interpretation and analysis methodsShields 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 PublicationOncologyLiterature and COA instrument reviews
2015Patient 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 AInvited panel at the 6th Annual Patient-reported Outcome Workshop. Silver Spring, MD USALiterature and COA instrument reviews
2015Qualitative cross-cultural exploration of breast symptoms and impacts associated with hormonal treatments for menopausal symptoms to inform the development of new patient-reported measurement toolsAbraham L, Humphrey L, Arbuckle R, Dennerstein L, Simon JA, Mirkin S, Bonner N, Walmsley S, Tatlock S, Symonds TMaturitas, 2015;80(3):273-281View PublicationWomen's healthQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2015Development and content validity testing of a patient-reported outcomes questionnaire for the assessment of hereditary angioedema in observational studiesBonner 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 BoardHealth and Quality of Life Outcomes, 2015;13:92, https://doi.org/10.1186/s12955-015-0292-7View PublicationGenetic diseases, Rare diseasesQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2015The Intestinal Gas Questionnaire: development of a new instrument for measuring gas-related symptoms and their impact on daily lifeChassany O, Tugaut B, Marrel A, Guyonnet D, Arbuckle R, Duracinsky M, Whorwell PJ, Azpiroz FNeurogastroenterology and Motility, 2015;27:885-898View PublicationGastroenterologyLiterature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2015Unique Challenges in Development, Psychometric Evaluation and Interpretation of Daily and Event Diaries as Endpoints in Clinical TrialsGater A, Coon CD, Nelsen LM, Girman CTherapeutic Innovation and Regulatory Science, 2015;49(6):813-821 View PublicationLiterature and COA instrument reviews, Psychometric evaluation and statistical analysis of COAs
2015Assessing the Impact of Caring for a Person with Schizophrenia: Development of the Schizophrenia Caregiver QuestionnaireGater A, Rofail D, Marshall C, Tolley C, Abetz-Webb L, Zarit SH, Berardo CGPatient, 2015;8:507-520View PublicationCNS/NeurologyCOA instrument development or modification, Literature and COA instrument reviews
2015The humanistic, economic and societal burden of Herpes Zoster in Europe: a critical reviewGater A, Uhart M, McCool R, Préaud EBMC Public Health, 2015;15:193, https://doi.org/10.1186/s12889-015-1514-yView PublicationInfectious diseasesLiterature and COA instrument reviews
2015Development of a Consensus Statement for the Definition, Diagnosis, and Treatment of Acute Exacerbations of Idiopathic Pulmonary Fibrosis Using the Delphi TechniqueMaher T, Whyte M, Hoyles R, Parfrey H, Ochiai Y, Mathieson N, Turnbull A, Williamson N, Bennett B Advances in Therapy, 2015;32:929-943View PublicationRespiratory diseasesLiterature and COA instrument reviews, COA instrument development or modification
2015Development and content validity testing of a patient-reported treatment acceptance measure for use in patients receiving treatment via subcutaneous injectionTatlock S, Grant L, Spertus J, Khan I, Arbuckle R, Manvelian G, Sanchez RValue in Health, 2015;18(8):1000-1007View PublicationCardiovascularLiterature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2015The feasibility of using electronic clinical outcome assessments in people with schizophrenia and their informal caregiversTolley C, Rofail D, Gater A, Lalonde JKPatient Related Outcome Measures, 2015;6:91-101View PublicationCNS/NeurologyCOA instrument development or modification
2015Development 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 RPoster presented at ISPOR, 2015. Value in Health, 2015;18(3):PA210View PublicationOncologyQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2015Functional 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 MPoster presented as the Sixth Annual PRO Consortium Workshop – Silver Spring, MD – April 29-30, 2015View PublicationGastroenterologyLiterature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs
2015Development of a Patient-Reported Outcome Instrument for the Measurement of the Sexual Impacts of PsoriasisCather JC, Horn EJ, Foley C, Sundaram M, Iovin R, Pompilus F, Stokes J, AL ShieldsPresented at the 73rd Annual Meeting of the American Academy of Dermatology. San Francisco, California, March 20-24, 2015.Dermatology, ImmunologyCOA instrument development or modification
2015Expert review on development of patient measure for statin intoleranceGalipaeu N, Foody JM, Sauris A, Edelman SV, Davidson M, Shields AL, Jacobson TAPoster 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 PublicationCardiovascularQualitative patient-centered research and evaluation of COAs
2015Development and validation of a novel patient-reported treatment satisfaction measure for hyperfunctional facial lines: facial line satisfaction questionnairePompilus F, Burgess S, Hudgens S, Banderas B, Daniels SJ Cosmet Dermatol, 2015;14(4): 274-285.View PublicationDermatologyLiterature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs
2015EVAPIL-R Scale: Continuous development and validation of a tool to assess patient-reported tolerability of different contraceptive methods in longitudinal studiesClerson P, Graesslin O, Gater A, Taylor F, Filonenko A, Schellschmidt I, Rosen KValue in Health, 2015;18(8):1000-1007View PublicationWomen's healthLiterature and COA instrument reviews, COA instrument development or modification
2014.11Device handling errors and the impact on quality of life and healthcare resource use in asthmatic patientsJha A, Heron L, Marshall J, Dunlop WPoster presented at ISPOR, November 2014. Value in Health vol. 17,7,PA599View PublicationRespiratory diseases, Medical devicesLiterature/landscape reviews, Evidence synthesis/utility generation
2014.11Elicitation of health state utilities associated with varying severities of flare in systemic lupus erythematosusHartz S, Liu-Leage S, Paget M, Pollard C, Enstone APodium presentation at ISPOR, November 2014. Value in Health vol. 17,7,PA331View PublicationImmunologyEvidence synthesis/utility generation
2014.11Development 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 SPoster presented at ISPOR, November 2014. Value in Health, 2014;17(7):PA649View PublicationLiterature and COA instrument reviews, COA instrument development or modification
2014.11Development, validation and use of observer-reported outcomes in clinical trials: challenges and solutionsPatrick DL, Arbuckle R, Burke LWorkshop presented at ISPOR, November 2014Literature and COA instrument reviews, COA instrument development or modification
2014.11Assessing 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 lifeRudell K, Tatlock S, Panter C, Arbuckle R, Symonds TPoster presented at ISPOR, November 2014. Value in Health, 2014;17(7):PA572View PublicationMusculoskeletal diseasesQualitative patient-centered research and evaluation of COAs
2014.11Development and content validity testing of a treatment acceptance measure for use in hypercholesterolemia patients receiving treatment via subcutaneous injectionTatlock S, Grant L, Arbuckle R, Khan I, Manvelian G, Sanchez RPoster presented at ISPOR, November 2014View PublicationCardiovascularLiterature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2014.11Clinical Outcome Assessment (COA) Instrument Scoring: the Validity and Precision of Unweighted Summary Scores Verse IRT Weighted Scores, and the Added Value of IRT Standard ErrorsCoon CD, Lenderking WRPoster presented at ISPOR, November 2014. Value in Health, 2014;17(7): PA585.View PublicationPsychometric evaluation and statistical analysis of COAs
2014.11Real world studies using Japanese administrative databases: chronic hepatitis C treatment pattern and resource useCrawford B, Tang A, Li H, Burns L, Wada K, McDonald JPoster presented at ISPOR, November 2014. Value in Health, 2014;17(7): PA370-A371.View PublicationInfectious diseasesLiterature and COA instrument reviews
2014.11Psychometric analyses to inform item reduction and evaluate sensitivity of the Early Mobility Impairment Questionnaire for multiple sclerosisPhillips G, Mathias A, Coon C, Agarwal S, Sen R, Shah R, Ziemssen TPoster presented at ISPOR, November 2014. Value in Health, 2014;17(7): PA403.View PublicationCNS/Neurology, ImmunologyPsychometric evaluation and statistical analysis of COAs
2014.1Assessing Patient-Reported Impact of Endometriosis Pain using a 7-day versus Daily Recall PeriodGater A, Wichmann K, Seitz C, Gerlinger C, Taylor F, Chen W, Filonenko APoster presented at ISOQOL, October 2014Women's healthCOA instrument development or modification
2014.09Burden of asthma on resource and productivity in 6 European countriesFletcher M, Dunlop W, Jha A, Heron L, Van der Molen T, Price DPoster presented at the European Respiratory Society Congress, September 2014View PublicationRespiratory diseasesTreatment pathways/burden of illness
2014.09Burden of asthma on resource and productivity in distinct patient clustersPrice D, Dunlop W, Jha A, Heron L, Van der Molen T, Fletcher MPoster presented at the European Respiratory Society Congress, September 2014View PublicationRespiratory diseasesTreatment pathways/burden of illness
2014.09Evaluation of the Post-stroke Checklist (PSC): A Follow-up Study in SingaporeChen C, Ward A, Sanin M, Hilal S, Venketasubramanian N, Gillard P, Walker M, Holloway L, Brainin MPoster presented at Asia Pacific Stroke Conference, September 2014View PublicationCardiovascularPsychometric evaluation and statistical analysis of COAs
2014.09Psychometric testing of the Early Mobility Impairment Questionnaire for multiple sclerosisZiemssen T, Mathias A, Coon C, Agarwal S, Shah R, Phillips GPoster presented at the 6th Triennial Joint Meeting of ACTRIMS and ECTRIMS, Boston, USA, 10-13 September 2014CNS/Neurology, ImmunologyPsychometric evaluation and statistical analysis of COAs
2014.06Patient adherence and non-persistence behaviour in real life actinic keratosis (AK) topical treatment in the UK, Germany and FranceErntoft S, Norlin J, Pollard C, Diepgen TLPoster presented at ISPOR, June 2014. Value in Health vol. 17,3,PA287View PublicationDermatologyEvidence synthesis/utility generation
2014.06A European study of the emotional and physical impact of relapse on patients with multiple myelomaHulin C, Hansen T, Laurenson S, Lawrence J, Streetly MPoster presented at the European Haematology Association, June 2014OncologyEvidence synthesis/utility generation
2014.06The burden of relapse on European hematologists treating multiple myelomaHansen T, Streetly M, Laurenson S, Lawrence J, Hulin CPoster presented at the European Haematology Association, June 2014Hematology, OncologyTreatment pathways/burden of illness
2014.06Qualitative research to better understand the experience of Pancreatic Exocrine Insufficiency (PEI) symptoms from the patient perspectiveBonner N, Tolley C, Williamson N, Arbuckle R, Platon J, Haeusler J, Schifflers MPoster presented at European Pancreatic Club, June 2014Endocrinology/Metabolic diseasesQualitative patient-centered research and evaluation of COAs
2014.06Assessing the content validity of the endometriosis symptom diary and endometriosis impact scaleGater A, Wichmann K, Seitz C, Gerlinger C, Taylor F, Chen W, Filonenko APoster presented at ISPOR, June 2014. Value in Health, 2014;17(3):PA198-A199View PublicationWomen's healthQualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs
2014.06Development and psychometric evaluation of a canine dermatitis quality of life questionnaire: Results from three clinical trialsPostorino-Reeves N, Brohan E, Tatlock S, Panter C, Amodie D, Gasper SPoster presented at ISPOR, June 2014. Value in Health, 2014;17(3):PA198View PublicationAnimal health, DermatologyPsychometric evaluation and statistical analysis of COAs
2014.06Moving Beyond the Traditional Psychometric Validation of New Phase 3 Clinical Outcome AssessmentsKammerman LA, Izem R, Coon C, Johnson LLPodium presentation at the Drug Information Association 50th Annual Meeting; June 2014. San Diego, CAView PublicationPsychometric evaluation and statistical analysis of COAs
2014.06Development and validation of the fatigue symptoms and impacts questionnaire – relapsing multiple sclerosis (FSIQ-RMS™)Stokes J, Schuler R, Yaworsky A, Hunsche EPoster presented at ISPOR, June 2014. Value in Health, 2014;17(3): PA195-A196.View PublicationCNS/Neurology, ImmunologyQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2014.06Qualitative 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-MMTrask PC, Taylor F, Shields A, Mehta J, Foley C, Olude O, Lamoureux R, Iovin R, Hsu KPoster presented at ISPOR, June 2014. Value in Health, 2014;17(3): PA93.View PublicationOncologyQualitative patient-centered research and evaluation of COAs
2014.06Cost analysis of implementing expanded umbilical cord blood graft in CanadaTremblay G, Cohen S, Roy JPoster presented at ISPOR, June 2014. Value in Health, 2014;17(3): PA227.View PublicationWomen's health, Pediatric careEconomic models
2014.05The secondary care cost burden to the NHS associated with the 2012 pertussis outbreak in EnglandHolbrook T, Coles V, Carroll S, Pollard C, Oakley SPoster presented at the European Society for Paediatric Infectious Diseases, May 2014Infectious diseases, Pediatric careTreatment pathways/burden of illness
2014.05Development of the Initial Version of the Asthma Daily Symptom DiaryMocarski 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 2014Respiratory diseasesLiterature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2014.05Identifying and Measuring the Core Symptoms Reported by Persons with Asthma: A review of the Existing Qualitative Literature and Patient-Reported Outcome MeasuresNelsen 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:A4024View PublicationRespiratory diseasesLiterature and COA instrument reviews
2014.04Developing a pediatric COA measurement strategy; a case study in asthmaArbuckle ROral presentation presented at Annual Critical Path Institute Patient-Reported Outcome (PRO) Consortium Workshop, April 2014View PublicationRespiratory diseases, Pediatric careCOA instrument development or modification
2014.04Functional 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 MPoster presented at the Fifth Annual PRO Consortium Workshop – Silver Spring, MD – April 29-30, 201View PublicationGastroenterologyLiterature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs
2014.03In-depth Investigation of Patient-Reported Sexual, Reproductive, and Relationship Impacts of PsoriasisCather JC, Horn EJ, Sundaram M, Mukherjee Bal V, Wang K, Iovin R, Foley C, Pompilus F, Shields APoster session presented at 72nd Annual Meeting of the American Academy of Dermatology, Denver, Colorado, USA, 21-25 March 2014Dermatology, ImmunologyQualitative patient-centered research and evaluation of COAs
2014.02HaemoPREF: A novel questionnaire for evaluating patient perception and preference for haemophilia A treatmentTeal S, Brohan E, Marshall C, Tolley C, Schulz M, Westfeld M, Cappelleri JCPoster presented at EAHAD February 2014View PublicationHematologyPsychometric evaluation and statistical analysis of COAs
2014Dressing-related trauma: Clinical sequelae and resource utilization in a UK settingCharlesworth B, Pilling C, Chadwick P, Butcher MClinicoecon Outcomes Res 2014;6;227-239View PublicationSurgery anesthesiology and wound care, Medical devicesEvidence synthesis/utility generation
2014Burden of asthma on resource and productivity in 6 European countriesFletcher M, Dunlop W, Jha A, Heron L, Van der Molen T, Price DEur Respir J 2014; 44(50):3816View PublicationRespiratory diseasesTreatment pathways/burden of illness
2014Burden of asthma on resource and productivity in distinct patient clustersPrice D, Dunlop W, Jha A, Heron L, Van der Molen T, Fletcher MEur Respir J 2014; 44(58):3020View PublicationRespiratory diseasesTreatment pathways/burden of illness
2014Can individual patients assess differences in quality of life between groups of patients?Cocks K, Velikova G, King MT, Fayers PM, Brown JMEuropean Journal of Cancer Care, 2014;23(2):483-409View PublicationOncologyQualitative patient-centered research and evaluation of COAs
2014The economic loss of allergic rhinitis associated with nasal congestionOkamoto Y, Crawford B, Okuizumi KIyaku Journal (Medicine and Drug Journal), 2014;50(3):103-111 [Japanese]Allergies, ImmunologyLiterature and COA instrument reviews
2014Informing drug development and clinical practice through patient-centered outcomes researchCoon CD, Lau DTClinical Therapeutics, 2014;36(5): 616-8.View PublicationCOA instrument development or modification, Literature and COA instrument reviews
2014Development and Validation of the AFSymp™: An Atrial Fibrillation-Specific Measure of Patient-Reported SymptomsArbuckle R, Abetz L, Medin J, Halling K, Kulich K, Edvardsson K, Coyne KSThe Patient, 2014;7;319-327View PublicationCardiovascularLiterature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs
2014Measuring the symptoms of pediatric constipation and irritable bowel syndrome with constipation: expert commentary and literature reviewArbuckle R, Carson R, Abetz-Webb L, Hyams J, Di Lorenzo C, Lewis B, Gargon E et alThe Patient, 2014;7:343-364View PublicationGastroenterology, Pediatric careLiterature and COA instrument reviews
2014Qualitative 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 toolsArbuckle R, Humphrey L, Abraham L, Dennerstein L, Simon JA, Mirkin S, Bonner N, Walmsley S, Tatlock S, Symonds TMaturitas, 2014;78(3):219-227View PublicationWomen's healthQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2014Burden of herpes zoster in the UK: findings from the zoster quality of life (ZQOL) studyGater A, Abetz-Webb L, Carroll S, Mannan A, Serpell M, Johnson RBMC Infectious Diseases, 2014;14:402, doi: 10.1186/1471-2334-14-402View PublicationInfectious diseasesPsychometric evaluation and statistical analysis of COAs
2014Sometimes it’s difficult to have a normal life: Results from a qualitative study exploring caregiver burden in SchizophreniaGater A, Rofail D, Tolley C, Marshall C, Abetz-Webb L, Zarit SH, Berardo CGSchizophrenia Research and Treatment, 2014;:368215, https://doi.org/10.1155/2014/368215View PublicationCNS/NeurologyQualitative patient-centered research and evaluation of COAs
2014Clinical value of a patient-reported goal-attainment measure: The global development of self-assessment goal achievement (SAGA) questionnaire for patients with lower urinary tract symptomsKhullar V, Espuna-Pons M, Marschall-Kehrel D, Fianu-Jonasson A, Kelleher CJ, Brubaker L, Beach J, Piault E, Trocio JNeurourology and Urodynamics, 2014;33(1):90-94View PublicationUrology/Urogenital
2014Burden 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: 10.1186/1477-7525-12-92View PublicationInfectious diseasesPsychometric evaluation and statistical analysis of COAs
2014Development 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 JHaemophilia, 2014;20:(5):666-673View PublicationHematologyPsychometric evaluation and statistical analysis of COAs
2014Evaluation of the Post Stroke Checklist: a pilot study in the United Kingdom and SingaporeWard 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):76-84View PublicationCardiovascularQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2014Development 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 PublicationDermatologyLiterature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2014Psychometric evaluation of a patient-reported treatment satisfaction measure for hyperfunctional facial lines in the upper faceDaniels S, Banderas B, Shields AL, Burgess SPoster presented at the 72nd annual meeting of the American Academy of Dermatology. Denver, CO USA, 2014DermatologyPsychometric evaluation and statistical analysis of COAs
2014The reliability of the patient-reported scar evaluation questionnaire (PR-SEQ) in a cohort of adults with linear scarsPleil A, Mathias A, Galipeau N, Shields AL, Jensen JPoster presented at ISPOR, June 2014. Value in Health, 2014;17(3): PA288.View PublicationDermatology, Surgery anesthesiology and wound carePsychometric evaluation and statistical analysis of COAs
2014The impact of upper facial lines and psychological impact of crow’s feet lines: content validation of the Facial Line Outcomes (FLO-11) QuestionnaireYaworsky A, Daniels S, Tully S, Beddingfield F, Kowalski J, Fitzgerald K, Somogyi C, Burgess SJ Cosmet Dermatol, 2014;13(4): 297-306.View PublicationDermatologyQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2013.12Qualitative 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-MMTrask 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 PublicationOncologyQualitative patient-centered research and evaluation of COAs
2013.11Budget impact analysis of a new fixed-dose combination inhaler for a clinical commissioning group within the National Health Service in EnglandDunlop W, Heron L, Fox G, Greaney MPoster presented at ISPOR, November 2013. Value in Health vol. 16,7,PA368View PublicationRespiratory diseases, Medical devicesEconomic models
2013.11Patient-reported outcome measures for systemic lupus erythematosus clinical trials: A content validity and psychometric performance reviewHumphrey L, Heron L, Pilling C, Holloway L, Højbjerre L, Strandberg-Larsen M, Hansen BBPoster presented at ISPOR, November 2013. Value in Health vol. 16,7,PA600-A601View PublicationImmunologyLiterature/landscape reviews, Evidence synthesis/utility generation, Treatment pathways/burden of illness
2013.11The value of pilot testing PRO symptom diaries prior to conducting cognitive debriefing interviews in children/ adolescents: qualitative and quantitative insightsArbuckle R, Holloway L, Carson RT, Dennee-Sommers B, Abetz-Webb LPoster presented at ISPOR, November 2013. Value in Health, 2013;16(7):PA607View PublicationGastroenterology, Pediatric careCOA instrument development or modification, Psychometric evaluation and statistical analysis of COAs
2013.11A 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 yearsArbuckle R, Marshall CPoster presented at ISPOR, November 2013. Value in Health, 2013;16(7):PA338View PublicationPediatric careQualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs
2013.11How burdensome is completion of electronic Patient-Reported Outcomes (ePRO)? Item completion times and qualitative evidence from studies in four different health conditionsArbuckle R, Tolley C, Burbridge CPoster presented at ISPOR, November 2013. Value in Health, 2013;16(7):PA604View PublicationCNS/Neurology, Women's health, Pediatric care, GastroenterologyCOA instrument development or modification, Psychometric evaluation and statistical analysis of COAs
2013.11Evaluating 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 LPoster presented at ISPOR, November 2013. Value in Health, 2013;16(7):PA626View PublicationCNS/NeurologyQualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs
2013.11PRO claims in Japanese oncology product labelingCrawford BPoster presented at ISPOR, November 2013. Value in Health, 2013;16(7):PA421View PublicationOncologyLiterature and COA instrument reviews
2013.11Development of the schizophrenia caregiver questionnaire: modification of the zarit burden interview informed by qualitative insightsGater A, Rofail D, Tolley C, Marshall C, Abetz-Webb L, Zarit SH, Galani Berardo CPoster presented at ISPOR, November 2013. Value in Health, 2013;16(7):PA577View PublicationCNS/NeurologyLiterature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2013.11Assessing 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 FPoster presented at European Congress on Endometriosis, November 2013Women's healthCOA instrument development or modification
2013.11The effect of medical devices with dose-memory and reminder functions on patients' treatment adherence confidence and disease self-managementHall R, Harald-Kongsø J, Humphrey L, Willgoss TPoster presented at ISPOR, November 2013. Value in Health, 2013;16(7):PA336View PublicationMedical devicesLiterature and COA instrument reviews
2013.11Agreement 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 childrenHolloway L, Arbuckle R, Carson RT, Dennee-Sommers B, Abetz-Webb LPoster presented at ISPOR, November 2013. Value in Health, 2013;16(7):PA499View PublicationGastroenterology, Pediatric careCOA instrument development or modification, Psychometric evaluation and statistical analysis of COAs
2013.11Herpes zoster in Europe: a review of evidence documenting humanistic, economic and societal burdenMcCool R, Gater A, Préaud E, Baron-Papillon F, Largeron NPoster presented at ISPOR, November 2013. Value in Health, 2013;16(7):PA622View PublicationInfectious diseasesLiterature and COA instrument reviews
2013.11Patients 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 studiesScott J, Gilles L, Fu M, Brohan E, Amatya R, Jessner W, Beumont-MauvielPoster presented at ISPOR, November 2013View PublicationInfectious diseasesPsychometric evaluation and statistical analysis of COAs
2013.11Item refinement and psychometric testing of a novel survey for evaluating patient perception and preference for haemophilia A treatmentTeal SA, Brohan E, Hettema Y, Humphrey L, Willgoss T, Hudgens S, Westfeld M, Cappelleri JCPoster presented at ISPOR, November 2013. Value in Health, 2013;16(7):PA597View PublicationHematologyPsychometric evaluation and statistical analysis of COAs
2013.11Determining the magnitude of a detectable and a relevant treatment benefit in aesthetic medicine using a photoguide and the internetPleil AM, Bushmakin AG, Shields AL, Jensen J, Cappelleri JCPoster presented at ISPOR, November 2013. Value in Health, 2013;16(7): PA603.View PublicationSurgery anesthesiology and wound carePsychometric evaluation and statistical analysis of COAs
2013.11Exploratory structural equation models: a simulation study exploring geomin and target rotation techniques on variations of ESEM modelsSen RPoster presented at ISPOR, November 2013. Value in Health, 2013;16(7): PA588.View PublicationPsychometric evaluation and statistical analysis of COAs
2013.1Disease state preference study in the UK general public for late-stage chronic lymphocytic leukaemiaTolley K, Goad C, Yi Y, Maroudas P, Caravotas L, Thompson GEur J Health Econ 2013 Oct;14(5):749-59OncologyEvidence synthesis/utility generation
2013.1Utilization pattern and healthcare resource evaluation of Japanese insulin initiators during their first yearIkeda S, Yeung CK, Sato M, Crawford BPresentation at the Asian Annual Conference on Pharmacoepidemiology, October 2013View PublicationEndocrinology/Metabolic diseasesPsychometric evaluation and statistical analysis of COAs
2013.1The 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 diseaseArbuckle R, Abetz-Webb LOral presentation at ISOQOL, October 2013View PublicationPediatric careQualitative patient-centered research and evaluation of COAs
2013.1The Development and Validation of Clinician-Reported Outcome Instruments: The Application of Methods from Patient-Reported OutcomesArbuckle R, Kitchen H, Tatlock SWorkshop presented at ISOQOL, October 2013View PublicationCOA instrument development or modification, Psychometric evaluation and statistical analysis of COAs
2013.1Real-world resource utilization and costs following hospitalization of patients with heart failure and preserved ejection fraction in five regions of ChinaLi X, Crawford B, Wang D, Deschaseaux C, Liu LPoster presented at Great Wall International Congress of Cardiology, October 2013 Cardiovascular Disease Clinical Research, 2013;99(Supp 3):A213-A214View PublicationCardiovascularLiterature and COA instrument reviews
2013.1In-depth Investigation of Patient-Reported Sexual, Reproductive, and Relationship Impacts of PsoriasisCather JC, Horn EJ, Sundaram M, Mukherjee Bal V, Wang K, Iovin R, Foley C, Pompilus F, Shields APoster session presented at 22nd Congress of the European Academy of Dermatology and Venereology, Istanbul, Turkey, October 2-6, 2013Dermatology, ImmunologyQualitative 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 SchizophreniaTolley C, Rofail D, Gater A, Lalonde JPoster presented at European Conference on Schizophrenia Research, September 2013View PublicationCNS/NeurologyCOA instrument development or modification
2013.08Comparative 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 studiesMorimoto T, Crawford B, Wada K, Ueda SPoster presented at European Society of Cardiology, August/September 2013CardiovascularLiterature and COA instrument reviews
2013.06Early mobility impairment: bridging the communication gap between people with multiple sclerosis and their healthcare providersAnderseck B, Van Asch P, Johnson J, Agarwal S, Hudgens S, Humphrey L, Medcalf R, Ziemssen TPoster presented at Meeting of the European Neurological Society, June 2013 View PublicationCNS/Neurology, ImmunologyCOA instrument development or modification
2013.06Utility and willingness to pay for lung cancer treatments: Patient versus general population values in ThailandThongprasert S, Permsuwan U, Sakulbumrungsil R, Chaiyakunapruk N, Crawford B, Petcharapiruch S, Leartsakulpanitch JPoster presented at HTAi, June 2013OncologyEvidence synthesis/utility generation
2013.06Systematic review of the practice patterns and burden among patients with hemophilia in JapanWada K, Crawford B, Lee CW, Krishnan SPoster presented at International Society of Thrombosis and Haemostasis, Congress, June/July 2013HematologyLiterature and COA instrument reviews
2013.05Exploring the humanistic and economic burden of Crohn's disease: Considerations for novel compoundsHansen BB, Kitchen H, Heron L, Gater A, Walmsley S, Pollard C, Højbjerre L, Strandberg-Larsen MPoster presented at ISPOR, May 2013. Value in Health vol. 16,3,PA43View PublicationGastroenterology, ImmunologyTreatment pathways/burden of illness
2013.05Patient burden associated with wet age-related macular degeneration in JapanAdachi K, Wang ECY, Kudo K, Crawford B, Fujita K, Nagai Y, Arisawa A, Hiramoto Y, Fujii S, Uda S, Takahashi K, Yuzawa MPoster presented at ISPOR, May 2013. Value in Health, 2013;16(3):PA179View PublicationOphthalmologyPsychometric evaluation and statistical analysis of COAs
2013.05Interviews with patients with chronic hepatitis C virus infection document unmet needs, content validity, and comprehension of PROs for clinical trialsBlackburn S, McCool R, Panter C, Young V, Peterson S, Mitchell L, Machouf N, Scott J, Humphrey LPoster presented at ISPOR, May 2013. Value in Health, 2013;16(3):PA6View PublicationInfectious diseasesQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2013.05Assessing 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 CGPoster presented at American Psychiatric Association, May 2013; IPS, American Psychiatric Association, October 2013 CNS/NeurologyLiterature and COA instrument reviews, COA instrument development or modification
2013.05Sometimes it’s difficult to have a normal life: Results from a qualitative study exploring caregiver burden in SchizophreniaGater A, Rofail D, Tolley C, Marshall C, Abetz-Webb L, Zarit SH et alPoster presented at Annual Meeting, American Psychiatric Association, May 2013 IPS, American Psychiatric Association, October 2013 CNS/NeurologyQualitative patient-centered research and evaluation of COAs
2013.05Assessing health-related quality of life (HRQoL) in major depressive disorder (MDD): do commonly used instruments meet EMA requirements for psychometric properties and content relevanceDanchenko N, Rive B, Pendlebury S, Abetz LPoster presented at ISPOR, May 2013. Value in Health, 2013;16(3): PA64.View PublicationCNS/NeurologyLiterature and COA instrument reviews
2013.05The 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 LPoster presented at ISPOR, May 2013. Value in Health, 2013;16(3): PA65.View PublicationCNS/NeurologyLiterature and COA instrument reviews
2013.05Use of the functional assessment of cancer therapy-anemia (FACT-AN) instrument in persons with MPN-associated myelofibrosis and anemiaHudgens S, Gale RP, Tencer T, Khan ZPoster presented at ISPOR, May 2013. Value in Health, 2013;16(3): PA148.View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2013.05Health-related quality of life and productivity impact of myelodysplastic syndromes (MDS): The patient perspectiveKomrokji R, Mahmoud D, Hudgens S, Taylor F, Pompilus F, Hwang S, Beach CLPoster session presented at 12th International Symposium on Myelodysplastic Syndromes, Berlin, 8-11 May 2013 Blood, 2013;120(21): 4705.View PublicationHematology, OncologyLiterature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs
2013.05Is a picture worth a thousand words? The development of a clinician and patient reported photonumeric guide to assess scar severityPleil A, Jensen J, Galipeau N, Taylor F, Pompilus F, Shields ALPoster presented at ISPOR, May 2013. Value in Health, 2013;16(3): PA31.View PublicationSurgery anesthesiology and wound careCOA instrument development or modification
2013.05Fatigue severity scale: reliability, validity and interpretation of change - evidence from two clinical trials in patients with chronic HCV infectionScott J, Rosa K, Fu M, Cerri K, Peeters M, Beumont-Mauviel M, Gilles L, Blackburn SPoster presented at ISPOR, May 2013. Value in Health, 2013;16(7): PA588.View PublicationInfectious diseasesPsychometric evaluation and statistical analysis of COAs
2013.05Evaluating and improving methods for cognitive debriefing PRO questionnairesStokes J, Yaworsky A, Galipeau N, Pompilus F, Foley C, Lamoureux R, Lovin R, Shields APoster presented at ISPOR, May 2013. Value in Health, 2013;16(3): PA47.View PublicationLiterature and COA instrument reviews
2013Budget impact analysis of a fixed-dose combination of fluticasone propionate and formoterol fumarate (FP/FORM) in a pressurized metered-dose inhaler (pMDI) for asthmaDunlop W, Heron L, Fox G, Greaney MAdvances in Therapy, vol. 30, 933–944 (2013)View PublicationRespiratory diseases, Medical devicesEconomic models
2013Cost-effectiveness of modified-release prednisone in the treatment of moderate to severe rheumatoid arthritis with morning stiffness based on directly elicited public preference valuesDunlop W, Iqbal I, Khan I, Ouwens M, Heron LClinic Econ Outcomes 2013; 5:555-564View PublicationMusculoskeletal diseases, ImmunologyEconomic models, Evidence synthesis/utility generation
2013Perceptions of usability and design for prefilled insulin delivery devices for patients with type 2 diabetesHeron L, Reaney M, Hermanns N, Abetz L, Gregg LDiabetes Spectr Winter 2013;26:16View PublicationEndocrinology/Metabolic diseases, Medical devicesEvidence synthesis/utility generation
2013Utility elicitation study in the UK general public for late-stage chronic lymphocytic leukaemiaTolley K, Goad C, Yi Y, Maroudas P, Thompson GThe European Journal of Health Economics, 14, 749–759 (2013)View PublicationOncologyEvidence synthesis/utility generation
2013Sample size calculations for pilot randomised trials: a confidence interval approachCocks K, Torgerson DJournal of Clinical Epidemiology, 2013;66(2):197-201View PublicationPsychometric evaluation and statistical analysis of COAs
2013Real-world characterization of hypertension patients in Japan: A 1-Year overviewCrawford B, Ong SH, Falvey HAsian Journal of Pharmaceutical and Clinical Research, 2013;6 (suppl 4):93-96View PublicationCardiovascularPsychometric evaluation and statistical analysis of COAs
2013The effect of medical device dose-memory functions on patients’ adherence to treatment, confidence, and disease self-managementHall R, Willgoss T, Humphrey L, Kongsø JHPatient Preference and Adherence, 2013;8:775-788View PublicationMedical devicesLiterature and COA instrument reviews
2013Economic impact of venous thromboembolism following major orthopedic surgery in JapanTakai S, Akagi M, Crawford B, Ichinohe S, Majima T, Mikami H, Niki Y, Tanaka S, Tsumura HValue in Health, 2013; Regional Issue 2: 81-8View PublicationCardiovascular, Surgery anesthesiology and wound carePsychometric evaluation and statistical analysis of COAs
2013Psychometric performance of a new patient-reported psoriasis symptom diaryNyirady J, Mallya UG, Guettner A, Papavassilis C, Strober BE, Gottlieb AB, Lebwohl M, Gwaltney CJ, Turner-Bowker DM, Shields ALValue in Health, 2013;16(6): 1014-1022.View PublicationDermatology, ImmunologyPsychometric evaluation and statistical analysis of COAs
2013Effectiveness of alcohol treatment interventions integrated into routine tuberculosis care in Tomsk, RussiaShin S, Livchits V, Smith Connery H, Shields AL, Fitzmaurice G, Nelson A, Greenfield SAddiction, 2013;108(8): 1387-1396View PublicationRespiratory diseases, AddictionPsychometric evaluation and statistical analysis of COAs
2013Training and fidelity monitoring of alcohol treatment interventions integrated into routine tuberculosis care in Tomsk, Russia: the IMPACT effectiveness trialSmith 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 GroupSubstance Use and Misuse, 2013;48(9): 784-792.View PublicationRespiratory diseases, AddictionLiterature and COA instrument reviews
2013Patient reported outcomes are changing the landscape in oncology care: Challenges and opportunities for the payerZagadailov E, Fine M, Shields ALAmerican Health & Drug Benefits, 2013;6(5): 264–274.View PublicationOncologyLiterature and COA instrument reviews
2013“Not just little adults”: Qualitative methods to support the development of pediatric patient-reported outcomesArbucke R, Abetz-Webb LThe Patient, 2013;6(3):143-159 View PublicationPediatric careLiterature and COA instrument reviews, COA instrument development or modification, Qualitative patient-centered research and evaluation of COAs
2013Health-related quality of life of women with menopausal hot flushes and night sweatsAyers B, Hunter MSClimacteric, 2013;16(2):235-239View PublicationWomen's healthPsychometric evaluation and statistical analysis of COAs
2013Development and validation of the living with pulmonary hypertension questionnaire in pulmonary arterial hypertension patientsBonner N, Abetz L, Meunier J, Sikirica M, Mathai SCHealth and Quality of Life Outcomes, 2013;11:161, doi: 10.1186/1477-7525-11-161View PublicationCardiovascularCOA instrument development or modification, Psychometric evaluation and statistical analysis of COAs
2013Challenges in quantifying the patient-reported burden of herpes zoster and post-herpetic neuralgia in the UK: learnings from the Zoster Quality of Life (ZQOL) studyCarroll S, Gater A, Abetz-Webb L, Smith F, Demuth D, Mannan ABMC Research Notes, 2013;6:486, https://doi.org/10.1186/1756-0500-6-486View PublicationInfectious diseasesPsychometric evaluation and statistical analysis of COAs
2013Mental Illness: Clinicians' Attitudes (MICA) scale-psychometric properties of a version for healthcare students and professionalsGabbidon J, Clement S, van Nieuwenhuizen A, Kassam A, Brohan E, Norman I, Thornicroft GPsychiatry Research, 2013;206(1):81-72View PublicationCNS/NeurologyPsychometric evaluation and statistical analysis of COAs
2013Validation of the COPD Population Screener (COPD-PS) and establishment of diagnostic cut-points in JapanInoue 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 GroupAmerican Journal of Respiratory and Critical Care Medicine, 2013;187:A2952View PublicationRespiratory diseasesPsychometric evaluation and statistical analysis of COAs
2013European content validation of the Self-Assessment Goal Achievement (SAGA) questionnaire in patients with overactive bladderKhullar V, Marschall-Kehrel D, Espuna-Pons M, Kelleher C, Tully S, Piault E, Brubaker L, Fianu-Jonasson A, Weinstein D, Bergqvist A, Kvasz MInternational Urogynecology Journal, 2013;24(9):1529-1536View PublicationUrology/UrogenitalCOA instrument development or modification
2013Functional 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 MPoster presented at the Fourth Annual PRO Consortium Workshop – Silver Spring, MD – April 24-25, 2013View PublicationGastroenterologyLiterature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs
2013In-depth Investigation of Patient-Reported Sexual, Reproductive, and Relationship Impacts of PsoriasisCather JC, Horn EJ, Sundaram M, Mukherjee Bal V, Wang K, Foley C, Pompilus F, Shields APoster presented at the 22nd Annual European Academy of Dermatology and Venereology, Belgrade, Serbia, 2013Dermatology, ImmunologyQualitative patient-centered research and evaluation of COAs
2013Patient- and clinician-reported satisfaction with pharmacological stress agents for single photon emission computed tomography (SPECT) myocardial perfusion imaging (MPI)Hudgens S, Breeze J, Spalding JJ Med Econ, 2013;16(6): 828-34.View PublicationCardiovascularPsychometric evaluation and statistical analysis of COAs
2013Patients’ experiences with Hidradenitis Suppurativa: A qualitative study of symptoms and impactsKimball AB, Sundaram M, Mukherjee Bal V, Okun MPoster session presented at 71st Annual Meeting of the Amercian Academy of Dermatology, Miami, Florida, March 1-5, 2013DermatologyQualitative patient-centered research and evaluation of COAs
2013The effect of ruxolitinib therapy on myelofibrosis-related symptoms and other patient-reported outcomes in COMFORT-I: a randomized, double-blind, placebo-controlled trialMesa 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 InvestigatorsJournal of Clinical Oncology, 2013;31(10): 1285-1292.View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2013Progressive burden of myelofibrosis in untreated patients: an assessment of patient-reported outcomes in patients randomized to placebo in the COMFORT-I studyMesa RA, Shields AL, Hare T, Erickson-Viitanen S, Sun W, Sarlis NJ, Sandor V, Levy RS, Verstovsek SLeukemia Research, 2013;37(8): 911-916.View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2013Association of health-related quality of life and neurocognitive function with progression free survival and progressive disease in patients with glioblastoma: A review of the literatureShields AL, Burgess S, Ravelo A, Taylor F, Mazar I, Abrey LPoster presented at the 17th European Cancer Congress, Amsterdam, Netherlands, 2013OncologyLiterature and COA instrument reviews
2013Development of a questionnaire to assess the impact of chronic low back pain for use in regulated clinical trialsStokes J, Evans CJ, Pompilus F, Shields AL, Summers KHPatient, 2013;6(4): 291-305.View PublicationMusculoskeletal diseasesQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2012.12Exploring the humanistic and economic burden of Crohn’s Disease: Considerations for novel compoundsKitchen H, Heron L, Gater A, Walmsley S, Pollard C, Hansen BB, Højbjerre L, Strandberg-Larsen MPoster presented at Advances in Inflammatory Bowel Diseases Crohn's & Colitis Foundation's National Clinical & Research Conference, December 2012Gastroenterology, ImmunologyTreatment pathways/burden of illness
2012.11Gaining reimbursement of orphan products in Europe: Challenges due to wide variations in evidence requirements and processesHeron L, Laurenson S, Costello J, Anderl C, Knospe JPoster presented ISPOR, November 2012. Value in Health vol. 15,7,PA308View PublicationRare diseasesEvidence synthesis/utility generation
2012.11Using clinical outcome assessments and economic data to facilitate patient access in rheumatoid arthritisGater A, Kitchen H, Heron L, Hansen BB, Højbjerre L, Strandberg-Larsen MPoster presented at ISPOR, November 2012. Value in Health vol. 15,7,PA484View PublicationMusculoskeletal diseases, ImmunologyEvidence synthesis/utility generation
2012.11Understanding disease presentation and patient-reported and economic impact of herpes zoster and post-herpetic neuralgia: findings from the zoster quality of life studyCarroll S, Gater A, Abetz L, Demuth D, Smith F, Mannan APoster presentation at ISPOR, November 2012 Value in Health; 2012;15(7):A514View PublicationInfectious diseasesPsychometric evaluation and statistical analysis of COAs
2012.11A novel conceptual model of caregiver burden in chronic heart failure: a qualitative studyBlackburn S, Humphrey L, Maguire L, Deschaseaux C, Strömberg APoster presented at ISPOR, November 2012. Value in Health, 2012;15():A378View PublicationCardiovascularQualitative patient-centered research and evaluation of COAs
2012.11Development and validation of a patient-reported outcomes questionnaire for the assessment of hereditary angioedema in observational studiesBonner N, Abetz L, Renault L, Caballero TPoster presented at ISPOR, November 2012. Value in Health, 2012;15(7):PA558View PublicationGenetic diseases, Rare diseasesQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2012.11Content validity of a treatment satisfaction questionnaire in non-Hodgkin’s lymphomaCampbell A, Wiesner C, Garcia EB, Tatlock S, Humphrey SPoster presented at ISPOR, November, 2012. Value in Health, 2012;15(7):A480View PublicationOncologyQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2012.11Understanding disease presentation and patient-reported and economic impact of herpes zoster and post-herpetic neuralgia: findings from the zoster quality of life studyCarroll S, Gater A, Abetz L, Demuth D, Smith F, Mannan APoster presented at ISPOR, November 2012. Value in Health, 2012;15(7):PA514View PublicationInfectious diseases, CNS/NeurologyPsychometric evaluation and statistical analysis of COAs
2012.11Assessing 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 stepsTugaut B, Guyonnet D, Arbuckle R, Azpiroz F, Chassany O, Whorwell P, Marrel APoster presented at ISPOR, November 2012. Value in Health, 2012;15(7):PA332View PublicationGastroenterologyLiterature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2012.11Development and validation of patient reported endpoints for T2DMBron M, Hudgens S, Stokes J, Banderas B, Viswanathan P, Dabbous OPoster presented at ISPOR, November 2012. Value in Health, 2012;15(7): PA503-A504.View PublicationEndocrinology/Metabolic diseasesQualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs
2012.11Patient-Reported Outcomes (PROs) in antineoplastic product approvals in Europe and in the USAPatrick D, Acquadro C, Teschendorf B, Emery MP, Caron M, Arnould BPoster presented at ISPOR, November 2012. Value in Health, 2012;15(7): PA431.View PublicationOncologyLiterature and COA instrument reviews
2012.11Do scars impact beyond just appearance? A report of the concept elicitation phase in the development of the patient reported scar evaluation questionnairePleil A, Jensen J, Galipeau N, Olude O, Klemm M, Shields ALPoster presented at ISPOR, November 2012. Value in Health, 2012;15(7): PA573.View PublicationSurgery anesthesiology and wound careQualitative patient-centered research and evaluation of COAs
2012.1EVAPIL-R scale: validation of tool to assess tolerability of different contraceptive methods in longitudinal studiesClerson P, Graesslin O, Gater A, Taylor F, Rofail D, Filonenko A, Schellschmidt I, Rosen KPoster presented at FIGO World Congress of Gynaecology and Obstetrics, October 2012 Gynecology & Obstetrics, 119:S3:S575View PublicationWomen's healthPsychometric evaluation and statistical analysis of COAs
2012.1An interactive overview of using Computer-Assisted Qualitative Data Analysis Software (CAQDAS) in Health Outcomes ResearchKitchen H, Marshall CWorkshop presented at ISOQOL, October 2012Literature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs
2012.1The Post-Stroke Checklist: A Tool for Standardizing Long-Term Patient Follow UpWard A, Chen C, Norrving B, Gillard P, Walker M, Blackburn S, Brainin M, Philp I, on behalf of the Global Stroke Community Advisory BoardPresented at the 8th Annual World Stroke Congress, Brasilia, Brazil, October 10-13 2012CardiovascularCOA instrument development or modification
2012.09A Conceptual Model for Binge Eating Disorder Based on Literature Review, Expert Insights, and Patient InterviewsSupina D, Shields AL, Stokes J, Taylor F, Pompilus F, Delbecque L, Erder MHPoster session presented at: Eating Disorders Research Society, 18th Annual Meeting, Porto, Portugal, 20-22 September 2012View PublicationEndocrinology/Metabolic diseasesLiterature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs
2012.09Introduction to Patient-Reported OutcomesCrawford B, Yao KShort course presented at ISPOR, September 2012View PublicationLiterature and COA instrument reviews, COA instrument development or modification
2012.09Using 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 CFIssue panel presented at ISPOR, September 2012Economic models
2012.07Adherence to oral tyrosine kinase inhibitor therapies in chronic myeloid leukemiaGater A, Heron L, Abetz-Webb L, Coombs J, Simmons J, Guilhot F, Rea DLeuk Res 2012 Jul;36(7):817-25View PublicationOncologyLiterature/landscape reviews, Evidence synthesis/utility generation
2012.06Patient burden associated with wet age-related macular degeneration in JapanAdachi K, Wang ECY, Kudo K, Crawford B, Fujita K, Nagai Y, Arisawa A, Hiramoto Y, Fujii S, Uda S, Takahashi K, Yuzawa MPoster presented at ISPOR, 2-6 June 2012. Value in Health, 2013;16(3):PA179View PublicationOphthalmologyPsychometric evaluation and statistical analysis of COAs
2012.06Pediatric patient-report outcomes and pediatric clinical trial design: challenges and solutionsArbuckle R, Tassinari MS, Carson RT, Baird MWorkshop presented at ISPOR, June 2012Pediatric careLiterature and COA instrument reviews, COA instrument development or modification
2012.06Assessing Health-Related Quality of Life (HRQoL) in Major Depressive Disorder (MDD): do commonly used instruments meet EMA requirements for psychometric properties and content relevanceDanchenko N, Rive B, Pendlebury S, Abetz LPoster presented at ISPOR, June 2012. Value in Health, 2013;16(3):PA64View PublicationCNS/NeurologyPsychometric evaluation and statistical analysis of COAs
2012.06The 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 LPoster presented at ISPOR, June 2012CNS/NeurologyLiterature and COA instrument reviews
2012.06Real world patient profile of patients with Reduced Ejection Fraction Heart Failure (HF-REF) in 5 regions of ChinaLi XY, Crawford B, Liao YH, Wang D, Sung JC, Zheng J, McDonald JPoster presented at ISPOR, June 2012. Value in Health, 2012;15(7):A129-A130View PublicationCardiovascularLiterature and COA instrument reviews
2012.06Psychometric validation of the tummy tuck questionnaireAbrams S, Hudgens S, Banderas B, Krishnan S, Ito D, Li-McLeod JPoster presented at ISPOR, June 2012. Value in Health, 2012;15(4): PA203.View PublicationSurgery anesthesiology and wound carePsychometric evaluation and statistical analysis of COAs
2012.06Review of the content validity of the patient-reported outcome measures used in patients with brain metastasesFitzgerald K, Ganguli A, Bonthapally V, Pompilus F, Delbecque L, Lasch KE, Ray SPoster presented at ISPOR, June 2012. Value in Health, 2012;15(4): PA227.View PublicationOncologyLiterature and COA instrument reviews
2012.06Use of the Functional Assessment of Cancer Therapy-Anemia (FACT-AN) instrument in persons with MPN-associated myelofibrosis and anemiaHudgens S, Gale RP, Tencer T, Khan ZPoster presented at ISPOR, June 2012. National Library of Science, 2014;36(4): 560-6.View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2012.06Utilization of Rasch measurement models for assessing validity: a mixed methods approachHudgens S, Globe D, Burgess S MWorkshop presented at ISPOR, June 2012Psychometric evaluation and statistical analysis of COAs
2012.06Development 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 SPodium presentation at ISPOR, June 2012. Value in Health, 2012;15(4): PA1.View PublicationOncologyLiterature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2012.06Progressive worsening of patient-reported outcomes in untreated patients with myelofibrosisMesa R, Shields AL, Hare T, Erickson-Viitanen S, Sun W, Verstovsek SPoster presented at ISPOR, June 2012. Value in Health, 2012;15(4): PA227.View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2012.06Evaluating meaningful change on the lung cancer symptom scale in small cell lung cancer: results from a phase III clinical trialO'Brien M, Hudgens S, King J, McNally R, Khan ZPoster presented at ISPOR, June 2012. Value in Health, 2012;15(4): PA227-A228.View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2012.05Elicitation of health state utilities associated with different durations of morning stiffness in rheumatoid arthritisIqbal I, Dasgupta B, Taylor P, Heron L, Pilling CPoster presented at the British Society for Rheumatology, May 2012Musculoskeletal diseases, ImmunologyEvidence synthesis/utility generation
2012.05Listening to children’s and parents’ voices: using patient-reported outcomes to empower patients with orphan diseases and their parentsAbetz-Webb A, Arbuckle RWorkshop presented at 6th European Conference on Rare Diseases & Orphan Products, May 2012View PublicationRare diseases, Pediatric careLiterature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs
2012.05Systematic Review of Pain Measurement Strategies to Support Product Labeling in US Regulated Clinical TrialsShields AL, Stokes J, Caron M, Emery MPoster 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 PublicationCNS/NeurologyLiterature and COA instrument reviews
2012.04Selection and development of Clinical Outcome Assessments (COAs) for use in pediatric clinical trialsTassinari MS, Wang P, Abetz L, Patrick D, Rofail, D, Lee J, Papadopoulos EOral presentation at Third Annual Patient-Reported Outcome Consortium Workshop, April 2012View PublicationPediatric careLiterature and COA instrument reviews, COA instrument development or modification
2012.02Hepatitis C in Asia: prevalence and complicationsCrawford B, Tanaka E, Yeung CK, Hwang S, Leteneux C, Kraemer M, Wang YJ, Chanatitarat CPoster session presented at Asian Pacific Association for the Study of the Liver conference, Taipei, Taiwan, 17–19 February 2012View PublicationInfectious diseasesLiterature and COA instrument reviews
2012.02Real-world costs of Reduced Ejection Fraction Heart Failure (HF-REF) from 5 regions of ChinaLi 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 PublicationCardiovascularLiterature and COA instrument reviews
2012Cognitive impairment associated with schizophrenia: A review of the humanistic burdenKitchen H, Rofail D, Heron L, Sacco PAdv Ther 2012;29:148View PublicationCNS/NeurologyTreatment pathways/burden of illness
2012Elicitation of health state utilities associated with different durations of morning stiffness in rheumatoid arthritisIqbal I, Dasgupta B, Taylor P, Heron L, Pilling CJ Med Econ 2012;15:1192View PublicationMusculoskeletal diseases, ImmunologyEvidence synthesis/utility generation
2012Elicitation of health state utilities associated with different durations of morning stiffness in rheumatoid arthritisIqbal I, Dasgupta B, Taylor P, Heron L, Pilling CJournal of Medical Economics Vol. 15, 6, 1192-1200 (2012)View PublicationMusculoskeletal diseases, ImmunologyEvidence synthesis/utility generation
2012Service user attachments to psychiatric key workers and teamsArbuckle R, Berry K, Taylor JLSocial Psychiatry and Psychiatric Epidemiology, 2012;47:817-825View PublicationCNS/NeurologyPsychometric evaluation and statistical analysis of COAs
2012Evidence-based guidelines for interpreting change scores for the European Organisation for the Research and Treatment of Cancer Quality of Life Questionnaire Core 30Cocks K, King MT, Velikova G, de Castro G, Jr., Martyn St-James M, Fayers PM, et alEuropean Journal of Cancer, 2012;48(11):1713-1721View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2012Hepatitis C Virus in Asia: utility values based on the Short Form-36 Questionnaire (SF-36)Crawford B, Yeung CK, Tanaka E, Kraemer M, Leteneux CExpert Review of Pharmacoeconomics and Outcomes Research, 2012;12:765-773View PublicationInfectious diseasesLiterature and COA instrument reviews, Psychometric evaluation and statistical analysis of COAs
2012Association between public views and reactions to mental illness and self-stigma among individuals in 14 European countriesEvans-Lacko S, Brohan E, Mojtabai R, Thornicroft Gtries. Psychological Medicine, 2012;42:1741-1752View PublicationCNS/NeurologyPsychometric evaluation and statistical analysis of COAs
2012Nutrition education and counselling provided during pregnancy: effects on maternal, neonatal and child health outcomesGirard AW, Olude OPaediatric and Perinatal Epidemiology, 2012;26(Supp 1):191-204View PublicationWomen's health, Pediatric careLiterature and COA instrument reviews
2012A decision aid to assist decisions on disclosure of mental health status to an employer: Protocol for the CORAL exploratory randomised controlled trialHenderson C, Brohan E, Clement S, Williams P, Lassman F, Schauman O, Murray J, Murphy C, Slade M, Thornicroft GBMC Psychiatry, 2012;12:133, doi: 10.1186/1471-244X-12-133View PublicationCNS/Neurology
2012The bladder pain/interstitial cystitis symptom score: development, validation, and identification of a cut scoreHumphrey L, Arbuckle R, Moldwin R, Nordling J, van de Merwe J P, Meunier J, Crook T, Abraham L European Urology, 2012;61:271-279View PublicationUrology/UrogenitalQualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs
2012Stigma and discrimination: critical human rights issues for mental healthRandall J, Thornicroft G, Brohan E, Kassam A, Lewis-Holmes Es. Oxford University Press, Oxford 2012CNS/NeurologyLiterature and COA instrument reviews
2012Factors contributing to the success of folic acid public health campaignsRofail D, Colligs A, Abetz L, Lindemann M, Maguire LJournal of Public Health (Oxf), 2012;34(1):90-99View PublicationWomen's healthLiterature and COA instrument reviews
2012Development and validation of patient-reported endpoints for T2DMBron M, Hudgens S, Stokes J, Banderas B, Viswanathan P, Dabbous OValue in Health, 2012;15: A503.View PublicationEndocrinology/Metabolic diseasesQualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs
2012Evaluating meaningful change on the lung cancer symptom scale in small cell lung cancer: results from a phase III clinical trialO'Brien M, Hudgens S, King J, McNally R, Khan ZValue in Health, 2012;15: A227.View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2012Evaluation of the willingness-to-pay for cancer treatment in Korean metastatic breast cancer patients: a multicenter, cross-sectional studyOh DY, Crawford B, Kim SB, Chung HC, McDonald J, Lee SY, Ko SK, Ro JAsia Pac J Clin Oncol, 2012;8: 282.View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2012Patient-Reported Outcomes (PROs) in antineoplastic product approvals in Europe and in the USAPatrick D, Acquadro C, Teschendorf B, Emery MP, Caron M, Arnould BValue in Health, 2012;15: A431.View PublicationOncologyLiterature and COA instrument reviews
2012The 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 NQuality of Life Research, 2012;20:59Gastroenterology, Pediatric careQualitative patient-centered research and evaluation of COAs
2012Do media messages change people's risk perceptions for binge drinking?Ayers B, Myers LBAlcohol and Alcoholism, 2012;47:52-56View PublicationAddictionPsychometric evaluation and statistical analysis of COAs
2012Effectiveness of group and self-help cognitive behavior therapy in reducing problematic menopausal hot flushes and night sweats (MENOS 2): a randomized controlled trialAyers B, Smith M, Hellier J, Mann E, Hunter MSMenopause, 2012;19:749-759View PublicationWomen's healthPsychometric evaluation and statistical analysis of COAs
2012Cognitive behaviour therapy for menopausal hot flushes and night sweats: A qualitative analysis of women's experiences of group and self-help CBTBalabanovic J, Ayers B, Hunter MSBehavioural and Cognitive Psychotherapy, 2012;4:441-457View PublicationWomen's healthQualitative exit and in-trial interviews
2012Women's experiences of group cognitive behaviour therapy for hot flushes and night sweats following breast cancer treatment: an interpretative phenomenological analysisBalabanovic J, Ayers B, Hunter MSMaturitas, 2012;72:236-242View PublicationOncology, Women's healthQualitative exit and in-trial interviews
2012A novel conceptual model of caregiver burden in chronic heart failure: a qualitative studyBlackburn S, Humphrey L, Maguire L, Deschaseaux C, Strömberg AValue in Health, 2012;15:A378View PublicationCardiovascularQualitative patient-centered research and evaluation of COAs
2012The Caregiver Burden Questionnaire for Chronic Heart Failure (CBQ-CHF): development and validationBlackburn S, Strömberg A, Humphrey L, Maguire L, Deschaseaux CJournal of Cardiac Failure, 2012;18(8):S83View PublicationCardiovascularCOA instrument development or modification
2012The 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 MQuality of Life Research, 2012;20:97-98Gastroenterology, Pediatric careQualitative patient-centered research and evaluation of COAs
2012Systematic review of beliefs, behaviours and influencing factors associated with disclosure of a mental health problem in the workplaceBrohan E, Wheat K, Henderson C, Malcolm E, Barley E, Clement S, Slade M, Thornicroft GBMC Psychiatry, 2012;12:11, doi: 10.1186/1471-244X-12-11View PublicationCNS/NeurologyLiterature and COA instrument reviews
2012Development and psychometric properties the Barriers to Access to Care Evaluation scale (BACE) related to people with mental ill healthClement S, Brohan E, Jeffery D, Henderson C, Hatch S L, Thornicroft GBMC Psychiatry, 2012;12:36, doi: 10.1186/1471-244X-12-36.View PublicationCNS/NeurologyPsychometric evaluation and statistical analysis of COAs
2012Development and validation of the self-completed ascites impact measure to understand patient motivation for requesting a paracentesisCrawford B, Piault E, Gotlieb W, Joulain FPatient Relatated Outcome Measures, 2012;3:21-30View PublicationOncologyLiterature and COA instrument reviews, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs
2012Reliability 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 BSaishin Seishin Igaku (Newest Psychiatric Medicine), 2012;17 (1):51-58View PublicationCNS/NeurologyPsychometric evaluation and statistical analysis of COAs
2012The effects of household food production strategies on the health and nutrition outcomes of women and young children: a systematic reviewGirard AW, Self JL, McAuliffe C, Olude OPaediatric and Perinatal Epidemiology, 2012;26:205-222View PublicationEndocrinology/Metabolic diseases, Pediatric care, Women's healthLiterature and COA instrument reviews
2012Health-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 TrialPorter J, Bowden DK, Economou M, Gater A et alAnemia, 2012;2012:297641, https://doi.org/10.1155/2012/297641View PublicationHematology, OncologyPsychometric evaluation and statistical analysis of COAs
2012The impact of spina bifida on caregiversRofail D, Maguire L, Heelis R, Colligs A, Lindemann M, Abetz LNeurology and Therapy, 2012;1:4, https://doi.org/10.1007/s40120-012-0004-8View PublicationCNS/NeurologyLiterature and COA instrument reviews
2012Patients' experience of asthma control and clinical guidelines: Perspectives from a qualitative studyRudell K, Hareendran A, Bonner N, Arbuckle R, Burbridge C, Abetz L Respiratory Medicine, 2012;106:909-911View PublicationRespiratory diseasesQualitative patient-centered research and evaluation of COAs
2012Anticipated discrimination among people with schizophreniaUçok 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;125:77-83View PublicationCNS/NeurologyQualitative patient-centered research and evaluation of COAs
2012Content validity of the PedsQL™ 3.2 diabetes module in newly diagnosed patients with type 1 diabetes mellitus ages 8-45Varni JW, Curtis BH, Abetz LN, Lasch KE, Piault EC, Zeytoonjian AAQuality of Life Research, 2012;22(8):2169-2181View PublicationEndocrinology/Metabolic diseasesCOA instrument development or modification
2012Psychometric validation of the tummy tuck questionnaireAbrams S, Hudgens S, Banderas B, Krishnan S, Ito D, Li-McLeod JValue in Health, 2012;15: A203.View PublicationSurgery anesthesiology and wound carePsychometric evaluation and statistical analysis of COAs
2012Review of the content validity of the patient-reported outcome measures used in patients with brain metastasesFitzgerald K, Ganguli A, Bonthapally V, Pompilus F, Delbecque L, Lasch KE, Ray SValue in Health, 2012;15: 227.View PublicationOncologyLiterature and COA instrument reviews
2012Content Assessment of the Facial Line Outcomes (FLO-11) Questionnaire (MT)Fitzgerald K, Yaworsky A, Daniels S, Galipeau N, Kornstein A, Evans C, Misra-Burgess SQual Life Res, 2012;20: 66.DermatologyCOA instrument development or modification
2012Evaluating a measure of tanning abuse and dependenceHillhouse J, Baker M, Turrisi R, Shields AL, Stapleton J, Jain S, Longacre IArchives of Dermatology, 2012;148(7): 815-819.View PublicationDermatologyPsychometric evaluation and statistical analysis of COAs
2012Development 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 imagingHudgens S, Kothari S, Spalding JQual Life Res, 2012;20: 30.CardiovascularCOA instrument development or modification
2012Evaluating the impact of patient recruitment and retention practicesLamberti M J, Mathias A, Myles J, Howe D, Getz KDrug Inf J, 2012;46: 573.View PublicationLiterature and COA instrument reviews
2012Using primary patient data to identify the symptoms of brain metastases to develop a patient-reported outcome measureLasch KE, Fitzgerald K, Ganguli A, Bonthapally V, Pompilus F, Delbecque L, Ray SJ Clin Oncol, 2012;30: e12515.View PublicationOncologyLiterature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs
2012The progressive burden of myelofibrosis (MF) in untreated patients: An assessment of patient reported outcomes in placebo-treated patients from COMFORT-1Mesa R, Shields AL, Hare T, Erickson-Viitanen S, Sun W, Verstovsek SPoster presented at the 17th Congress of the European Hematology Association (EHA). Amsterdam, Netherlands, 2012View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2012Pushing the boundaries of quality of life research: using patients’ words in a gap analysis of PRO measuresMukherjee Bal V, Lasch KQual Life Res, 2012;20: 13.Literature and COA instrument reviews, COA instrument development or modification
2012Development of a post stroke checklist to standardize long-term stroke carePhilp I, Brainin M, Walker M, Ward A, Gillard P, Shields AL, Norrving B and the Global Stroke Community Advisory BoardJournal of Stroke and Cerebrovascular Diseases, 2012;12: S1052-3057.View PublicationCardiovascularCOA instrument development or modification
2012Linguistic validation of translation of the Self-Assessment Goal Achievement (SAGA) questionnaire from EnglishPiault E, Doshi S, Brandt BA, Angün Ç, Evans CJ, Bergqvist A, Trocio JHealth Qual Life Outcomes, 2012;23(10): 40.View PublicationCOA instrument development or modification
2011.12Associations 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 MFMesa 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 InvestigatorsPoster 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 PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2011.11Guidelines for pharmacoeconomic evaluation for SerbiaNovakovic T, Tesic D, Stefanovic D, Medic G, Sovtic DPoster presented at ISPOR, November 2011. Value in Health vol. 14,7,PA358View PublicationLiterature/landscape reviews, Economic models
2011.11Medico-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 GPoster presented at ISPOR, November 2011. Value in Health vol. 14,7,PA262View PublicationOncologyEvidence synthesis/utility generation
2011.11Relative efficacy of bivalirudin vs. Heparin alone in STEMI patients treated with primary PCI – An indirect treatment comparisonMedic G, Schwenkglenks M, Eijgelshoven I, Smith A, Day J, Plent S, Bergman G, Toward TPoster presented at ISPOR, November 2011. Value in Health vol. 14,7,PA367View PublicationCardiovascularEvidence synthesis/utility generation, Psychometric evaluation and statistical analysis of COAs, Literature and COA instrument reviews
2011.11The 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 LIssue panel presented at ISPOR, November 2011Evidence synthesis/utility generation
2011.11Value Based Health Care Working GroupNaci HWorkshop presented at ISPOR, November 2011Evidence synthesis/utility generation
2011.11How 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 ItalyAbraham L, Arbuckle R, Dennerstein L, Humphrey L, Maguire L, Mirkin S, Simon JA, Symonds T, Walmsley SPoster presented at ISPOR, November 2011. Value in Health, 2011;14(7):PA404View PublicationWomen's healthQualitative patient-centered research and evaluation of COAs
2011.11Impact of Dry Eye on Everyday Life (IDEEL) - symptom bother: estimating cut-off scores for dry eye severity groupsAcaster S, Verboven Y, Begley C, Chalmers R, Abetz L, Thompson TPoster presented at ISPOR, November 2011. Value in Health, 2011;14:A507View PublicationOphthalmologyPsychometric evaluation and statistical analysis of COAs
2011.11How patients with chronic stable angina perceive and live with their disease on an everyday basis?Benmedjahed K, Arnould B, Guillemin I, Alegre PPoster presented at ISPOR, November 2011. Value in Health, 2011;14(7):PA386View PublicationCardiovascularQualitative patient-centered research and evaluation of COAs
2011.11Testing of a conceptual model of asthma in adolescentsBright N, Maguire L, Arbuckle R, Tabberer M, Dale PPoster presented at ISPOR, November 2011. Value in Health, 2011;14(7):A497View PublicationRespiratory diseasesQualitative patient-centered research and evaluation of COAs
2011.11Burden of herpes zoster and post-herpetic neuralgia: findings from a cross-sectional patient reported outcomes studyCarroll S, Gater A, Abetz L, Demuth D, Smith F, Mannan APoster presented at ISPOR, November 2011. Value in Health, 2011;14(7):PA405-A406View PublicationInfectious diseases, CNS/NeurologyPsychometric evaluation and statistical analysis of COAs
2011.11An evaluation of statistical methods used to analyse patient-reported outcomes (PRO) data in published metastatic cancer studiesGilet H, Brédart A, Regnault A, Bhandary D, Parasuraman BPoster presented at ISPOR, November 2011. Value in Health, 2011;14(7):PA471View PublicationOncologyLiterature and COA instrument reviews
2011.11Quality of life in small cell lung cancer: results of an open-label phase III clinical trialHudgens S, King J, Khan ZMPoster presented at ISPOR, November 2011. Value in Health, 2011;14(7):PA460View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2011.11Validation 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 SPoster presented at ISPOR, November 2011. Value in Health, 2011;14(7):PA255View PublicationCardiovascularPsychometric evaluation and statistical analysis of COAs
2011.11Evaluation of the measurement properties of the antihypertensive adherence surveyHudgens S, Lynch J, Pasquale K, Zacker CPoster presented at ISPOR, November 2011. Value in Health, 2011;14(7):PA382-A383View PublicationCardiovascularPsychometric evaluation and statistical analysis of COAs
2011.11Hemophilia A: patient impact and economic burden of the diseaseStrandberg-Larsen M, Gater A, Thomson APoster presented at ISPOR, November 2011. Value in Health, 2011;14:A64View PublicationHematologyLiterature and COA instrument reviews
2011.1Burden of herpes zoster and post-herpetic neuralgia: findings from a cross-sectional patient-reported outcomes studyCarroll S, Gater A, Abetz L, Demuth D, Smith F, Mannan APoster presented at British Geriatrics Society Autumn Meeting, October 2011Infectious diseases, CNS/NeurologyPsychometric evaluation and statistical analysis of COAs
2011.07Paediatrics: an unexplored and rewarding population – the right methods make it easierAbetz LPharmaphorum, July 2011Pediatric careLiterature and COA instrument reviews
2011.06The value of medicine: opportunities, not threatsCharlesworth BPharmaphorum, June 2011Evidence synthesis/utility generation
2011.06Burden of herpes zoster and post-herpetic neuralgia: interim findings from a cross-sectional, patient-reported outcomes studyCarroll S, Gater A, Abetz L, Demuth D, Smith F, Mannan APoster presented at British Pain Society Annual Scientific Meeting, June 2011Infectious diseases, CNS/NeurologyPsychometric evaluation and statistical analysis of COAs
2011.06Results 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 investigatorsPoster presented at the 16th Congress of the European Hematology Association. London, England, 9-12 June 2011Hematology, OncologyPsychometric evaluation and statistical analysis of COAs
2011.05‘Market access’ or just a new way of thinking about value?Charlesworth BPharmaphorum, May 2011Access/HEOR consultancy
2011.05Use of pain instruments as endpoints in regulatory submissions: implications of the US FDA’s new Patient Reported Outcomes (PRO) GuidanceBlack PM, Shields, AL, Halling KPoster 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 PublicationCNS/NeurologyLiterature and COA instrument reviews, COA instrument development or modification
2011Overview 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 careHeron L, De Castro Carpeño J, Chouaid C, Vergnenègre A, Bischoff H G, Walzer SPoster presented at ISPOR, May 2011. Value in Health vol. 14,3,PA177-A178View PublicationOncologyLiterature/landscape reviews, Evidence synthesis/utility generation
2011Economic burden of neural tube defects and impact of prevention with folic acid: A literature reviewYi Y, Lindemann M, Colligs A, Snowball CEur J Pediatr 2011; 170:1391–1400View PublicationWomen's healthLiterature/landscape reviews
2011Is menopause experience universal? Lessons learned from a global outlookAyers B, Forshaw M, Hunter MSPsychologist, 2011;24:348Women's healthLiterature and COA instrument reviews
2011Self-stigma, empowerment and perceived discrimination among people with bipolar disorder or depression in 13 European countries: the GAMIAN-Europe studyBrohan E, Gauci D, Sartorius N, Thornicroft G; GAMIAN-Europe Study GroupJournal of Affective Disorders, 2011;129(1-3):56-63View PublicationCNS/NeurologyPsychometric evaluation and statistical analysis of COAs
2011Disability hate crime and targeted violence and hostility: a mental health and discrimination perspectiveClement S, Brohan E, Sayce L, Pool J, Thornicroft GJournal of Mental Health, 2011;20(3):219-225View PublicationCNS/NeurologyLiterature and COA instrument reviews
2011Evidence-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 30Cocks K, King MT, Velikova G, Martyn St-James M, Fayers PM, Brown JMJournal of Clinical Oncology, 2011;29(1):89-96View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2011Haemophilia B: impact on patients and economic burden of diseaseGater A, Thomson TA, Strandberg-Larsen MThrombosis and Haemostasis, 2011;106(3):398-404View PublicationHematologyLiterature and COA instrument reviews
2011The Hot Flush Behavior Scale: a measure of behavioral reactions to menopausal hot flushes and night sweatsHunter MS, Ayers B, Smith MMenopause, 2011;18(11):1178-1183View PublicationWomen's healthQualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs, Literature and COA instrument reviews
2011Oncology patient-reported claims: maximising the chance for successKitchen H, Rofail D, Caron MEcancermedicalscience, 2011;5:212, doi: 10.3332/ecancer.2011.212View PublicationOncologyLiterature and COA instrument reviews
2011Employers' attitudes to people with mental health problems in the workplace in Britain: changes between 2006 and 2009Little K, Henderson C, Brohan E, Thornicroft GEpidemiology and Psychiatric Sciences, 2011;20(1):73-81View PublicationCNS/NeurologyPsychometric evaluation and statistical analysis of COAs
2011Reported stigma and discrimination by people with a diagnosis of schizophreniaRose D, Willis R, Brohan E, Sartorius N, Villares C, Wahlbeck K, Thornicroft G; INDIGO Study GroupEpidemiology and Psychiatric Sciences, 2011;20(2):193-204View PublicationCNS/NeurologyQualitative patient-centered research and evaluation of COAs
2011IBS-C patient symptom reports: analysis of exploratory open-ended questionsCarson R T, Lewis B E, Shiff S J, Johnston J M, Dennee-Sommers B, Lasch K, Hwang S, Marquis PValue in Health, 2011;14: A183.View PublicationGastroenterologyQualitative patient-centered research and evaluation of COAs
2011Evaluation of the measurement properties of the antihypertensive adherence surveyHudgens SValue in Health, 2011;14: A382.View PublicationCardiovascularPsychometric evaluation and statistical analysis of COAs
2011Quality of life in small cell lung cancer: Results of an open-label phase III clinical trialHudgens SValue in Health, 2011;14: A460.View PublicationOncologyPsychometric evaluation and statistical analysis of COAs
2011Treatment satisfaction instruments for different purposes during a product’s lifecycle: Keeping the end in mindRofail D, Regnault A, Taylor F, Filonenko APatient, 2011;4(4): 227-240.View PublicationLiterature and COA instrument reviews
2011Oncology patient-reported claims: maximising the chance for successRofail D, Abetz L, Caron M, Emery MP, Kitchen HEcancermedicalscience, 2011;5:212, doi: 10.3332/ecancer.2011.212View PublicationOncologyLiterature and COA instrument reviews
2011Development 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 patientsAbetz L, Rajagopalan K, Mertzanis P, Begley C, Barnes R, Chalmers RHealth and Quality of Life Outcomes, 2011;9:111, https://doi.org/10.1186/1477-7525-9-111View PublicationOphthalmologyQualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs
2011Goal attainment scaling in patients with lower urinary tract symptoms: development and pilot testing of the Self-Assessment Goal Achievement (SAGA) questionnaireBrubaker L, Khullar V, Piault E, Evans CJ, Bavendam T, Beach J, Yeh Y, Kopp ZS, Kelleher CJ, Trocio JInternational Urogynecological Journal, 2011;22(8):937-946View PublicationUrology/UrogenitalQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2011Assessing fibromyalgia-related fatigue: content validity and psychometric performance of the Fatigue Visual Analog Scale in adult patients with fibromyalgiaCrawford B, Piault EC, Lai C, Bennett RMClinical and Expimental Rheumatology, 2011;29:S34-43View PublicationCNS/NeurologyCOA instrument development or modification, Psychometric evaluation and statistical analysis of COAs
2011Development of a questionnaire to assess experience and preference of intranasal corticosteroids in patients with allergic rhinitisCrawford B, Stanford R, Wong A, Dalal A, Bayliss MPatient Related Outcome Measures, 2011;119-126View PublicationAllergiesPatient preference research, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2011Psychometric validation of the experience with allergic rhinitis nasal spray questionnaireCrawford B, Stanford R, Wong A, Dalal A, Bayliss MPatient Related Outcome Measures, 2011;2:127-133View PublicationAllergiesPsychometric evaluation and statistical analysis of COAs
2011Pain in castration-resistant prostate cancer with bone metastases: a qualitative studyGater A, Abetz-Webb L, Battersby C, Parasuraman B, McIntosh S, Nathan F, Piault ECHealth and Quality of Life Outcomes, 2011;9:88, doi: 10.1186/1477-7525-9-88View PublicationOncology, Men's healthQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2011Pediatric restless legs syndrome: analysis of symptom descriptions and drawingsPicchietti D L, Arbuckle RA, Abetz L, Durmer J S, Ivanenko A, Owens J A, Croenlein J, Allen R P, Walters ASJournal of Child Neurology, 2011;26(11):1365-76View PublicationCNS/Neurology, Pediatric careQualitative patient-centered research and evaluation of COAs
2011Validation 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 SValue in Health, 2011;14: A255.View PublicationCardiovascularPsychometric evaluation and statistical analysis of COAs
2011Translatability assessment of the post-migraine questionnaireLambe J, Acquadro C, Conway K, Ng-Mak D, Healy C, Norquist J, Fitzgerald K, Banderas B, Evans C, Kornstein AValue in Health, 2011;14: A214.View PublicationCNS/NeurologyCOA instrument development or modification
2011The 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 2010Marquis P, Caron M, Emery M P, Scott J, Arnould B, Acquadro CPharm Med, 2011;25: 147.View PublicationLiterature and COA instrument reviews
2011Key concepts of migraine postdrome: a qualitative study to develop a post-migraine questionnaireNg-Mak DS, Fitzgerald KA, Norquist JM, Banderas BF, Nelsen LM, Evans CJ, Healy CG, Ho TW, Bigal MHeadache, 2011;51: 105.View PublicationCNS/NeurologyQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2010.11Mixed 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 ZPoster presented at ISPOR, November 2010. Value in Health vol. 13,7,A253-A254View PublicationOncologyEvidence synthesis/utility generation
2010.11The cost-effectiveness of Abatacept in combination with methotrexate for the treatment of patient with active RA after an inadequate response to methotrexate in the UKGuyot P, Taylor P, Christensen R, Pericleous L, Lebmeier M, Drost P, Bergman GPoster presented at ISPOR, November 2010Musculoskeletal diseases, ImmunologyEconomic models
2010.11Use of qualitative research to identify determinants of persistence for osteoporotic treatmentsAlègre-Bouremad P, Arnould B, Spizak C, Marrel APoster presented at ISPOR November 2010. Value in Health, 2010;13(7):A382View PublicationMusculoskeletal diseasesQualitative patient-centered research and evaluation of COAs
2010.11Child and parent reports of symptoms of irritable bowel syndrome with constipation (IBS-C): results of qualitative interviewsArbuckle R, Lewis BE, Carson R, Abetz L, Johnston JMPoster presented at ISPOR November 2010. Value in Health, 2010;13(7):A373View PublicationGastroenterology, Pediatric careQualitative patient-centered research and evaluation of COAs
2010.11Herpes zoster and post-herpetic neuralgia: considerations for a prospective, cross-sectional, patient reported outcomes studyCarroll S, Gater A, Abetz L, Demuth D, Smith F, Mannan APoster presented at ISPOR, November 2010. Value in Health, 2010;13(7):A441-A442View PublicationInfectious diseases, CNS/NeurologyLiterature and COA instrument reviews
2010.11Development of an instrument mirroring patient and physician perception of psoriasis severity and treatment effectDe Climens R, Marant C, Arnould B, Thibout EPoster presented at ISPOR November 2010View PublicationDermatology, ImmunologyQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2010.11Indirect 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 therapyGuyot P, Taylor P, Christensen R, Pericleous L, Lebmeier M, Drost P, Bergman GPoster presented at ISPOR, November 2010Musculoskeletal diseases, ImmunologyLiterature and COA instrument reviews
2010.11Impact of MMRV mass vaccination with or without a catch up program on the incidence of varicella complications in FranceOuwens M, Littlewood K, Sauboin C, Tehard B, Alain S, Denis F, Boelle PYPoster presented at ISPOR, November 2010. Value in Health, 2010;13(7):A430View PublicationInfectious diseases, Vaccines
2010.11Confirmation 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 LPoster presented at ISPOR, November 2010. Value in Health, 2010;13(7):A274View PublicationOncology, Men's healthPsychometric evaluation and statistical analysis of COAs
2010.11Treatment satisfaction instruments for different purposes during a product’s lifecycle: Keeping the end in mindRofail D, Regnault A, Taylor F, Filonenko APoster presented at ISPOR, November 2010Literature and COA instrument reviews
2010.11Vision-Related Quality of life instruments (QoL) after refractive cataract surgeryTugaut B, Meunier J, Viala-Danten M, Arnould B, Berdeaux GPoster presented at ISPOR, November 2010. Value in Health, 2010;13(7):A403View PublicationOphthalmologyLiterature and COA instrument reviews
2010.11The missing piece between treatment experience and intention to persist: testing the internal consistency reliability and predictive validity of acceptabilityViala-Danten MPoster presented at ISPOR, November 2010. Value in Health, 2010;13(7):A361View PublicationPsychometric evaluation and statistical analysis of COAs
2010.1An introduction to pediatric patient-reported outcomes and pediatric clinical trial designArbuckle R, Abetz-Webb L, Carson R, Edelman Lewis B, Chassany OWorkshop presented at ISOQOL, October 2010View PublicationPediatric careLiterature and COA instrument reviews, COA instrument development or modification
2010.1Symptoms of pediatric chronic constipation: results of qualitative interviews with children and their primary caregiversCarson RT, Abetz LN, Arbuckle R A, Lewis B, Bonner N, Shiff S, Johnston JPoster presented at North American Society for Pediatric Gastroenterology, Hepatology and Nutrition Annual Meeting, October 2010Gastroenterology, Pediatric careQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2010.1Development of pediatric irritable bowel syndrome with constipation measures: results of qualitative interviews with children and their primary caregiversLewis B E, Arbuckle R, Abetz L, Carson R, Pompilus F, Johnston J, Shiff SPoster presented at North American Society for Pediatric Gastroenterology, Hepatology and Nutrition Annual Meeting, October 2010Gastroenterology, Pediatric careQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2010.1Results of the patient-reported outcomes of fatigue in cancer consortium study: patients define cancer-related fatigueLasch K, Marquis P, Zeytoonjian A, Yaworsky A, Leonard C, Patient-Reported Outcomes in Fatigue (PROOF) consortiumPoster session presented at 2nd International Cancer Fatigue Symposium, Montreal, Canada, 3–4 October 2010 View PublicationOncologyQualitative patient-centered research and evaluation of COAs
2010.09Cognitive impairment associated with schizophrenia: The humanistic and economic burdenRofail D, Kitchen H, Heyes A, Heron L, Sacco PPoster presented at the American Neurological Association, September 2010CNS/NeurologyTreatment pathways/burden of illness
2010.09Health care data in Asia: collecting, sharing and using in Thailand, China Mainland, South Korea, Taiwan, Japan, and MalaysiaBae S, Pwu RF, Xu L, Srithamrongsawat S, Ikdea S, Aljunid S, Bhattacharjya A, Crawford B, Sung JPlenary session at ISPOR, September 2010Literature and COA instrument reviews
2010.09The Impact of Dry Eye on Everyday Life (IDEEL) Questionnaire: Saturation, reliability, validity and discriminative ability compared to generic measuresAbetz L, Chalmers R, Begley C, Mertzanis P, Venkataraman K, Barnes RPoster presented at International Conference on the Tear Film & Ocular Surface (TFOS): Basic Science and Clinical Relevance, September 2010View PublicationOphthalmologyCOA instrument development or modification, Psychometric evaluation and statistical analysis of COAs
2010.09Using population-based data in outcomes research studies: strengths, weaknesses and lessons learnedChen W, Tang CH, Crawford B, Sung JWorkshop presented at ISPOR, September 2010Literature and COA instrument reviews
2010.09Conducting outcomes research in Asia: challenges of local adaptation of global OR studiesCrawford B, Wang L, Leartsakulpanitch JWorkshop presented at ISPOR, September 2010Literature and COA instrument reviews
2010.07Caregiver burden in Alzheimer's diseaseIto D, Stokes J, Piault-Louis E, Bonnet PPoster session presented at Alzheimer’s Association International Conference on Alzheimer’s Disease , Honolulu, USA, 10-15 July 2010View PublicationCNS/NeurologyQualitative patient-centered research and evaluation of COAs
2010.06Pediatric restless legs syndrome: qualitative analysis of symptom descriptions and drawingsPicchietti DL, Arbuckle R, Abetz LA, Durmer JS, Ivanenko A, Owens JA, Croenlein J, Allen RP, Walters ASPoster presented at Sleep Conference, June 2010CNS/NeurologyQualitative patient-centered research and evaluation of COAs
2010.04Development of a caregiver burden assessment in Alzheimer's diseaseIto D, Stokes J, Piault EPoster session presented at 62nd Annual Meeting of the American Academy of Neurology, 10–17 April 2010View PublicationCNS/NeurologyCOA instrument development or modification
2010Cost-utility analysis of rufinamide versus topiramate and lamotrigine for the treatment of children with Lennox-Gastaut Syndrome in the United KingdomVerdian L, Yi YSeizure 2010; 19(1):1-11View PublicationCNS/Neurology, Pediatric care, Rare diseasesEvidence synthesis/utility generation
2010Economic models in type 2 diabetesYi Y, Philips Z, Bergman G, Burslem KCurrent Medical Research & Opinion 2010; 26 (9): 2105–2118View PublicationEndocrinology/Metabolic diseasesLiterature/landscape reviews, Economic models
2010An interpretative phenomenological analysis of the psychological ramifications of hand-arm vibration syndromeAyers B, Forshaw MJournal of Health Psychology, 2010;15(4):533-542View PublicationCNS/NeurologyQualitative patient-centered research and evaluation of COAs
2010Understanding of stroke and coronary heart disease in the UK: an exploratory studyAyers BN, Myers LBPsychology, Health and Medicine, 2010;15(4):474-477View PublicationCardiovascularPsychometric evaluation and statistical analysis of COAs
2010Measuring mental illness stigmaBrohan E, Slade M, Clement S, Thornicroft GMental Health Outcome Measures (3rd edition), Royal College of Psychiatry, Oxford 2010CNS/NeurologyLiterature and COA instrument reviews
2010Stigma and discrimination of mental health problems: workplace implicationsBrohan E, Thornicroft GOccupational Medicine (London), 2010;60(6):414-415View PublicationCNS/NeurologyPsychometric evaluation and statistical analysis of COAs
2010Assessing sleep in fibromyalgia: investigation of an alternative scoring method for the Jenkins sleep scale based on data from randomized controlled studiesCrawford B, Piault E, Lai C, Sarzi-Puttini PClinical and Experimental Rheumatology, 2010;28(6 Supp 63):S100S109View PublicationCNS/NeurologyPsychometric evaluation and statistical analysis of COAs
2010PRO development: rigorous qualitative research as the crucial foundationLasch KE, Marquis P, Vigneux M, Abetz L, Arnould B, Bayliss M, Crawford B, Rosa KIn Bhugra D & Morgan C (Eds.) Principles of Social Psychiatry (2nd edition) Wiley-Blackwell 2010;331View PublicationLiterature and COA instrument reviews
2010Mental illness and the workplace: conceal or reveal?Wheat K, Brohan E, Henderson C, Thornicroft GJournal of the Royal Society of Medicine, 2010;103(3):83-86View PublicationCNS/NeurologyLiterature and COA instrument reviews
2010Drivers of treatment decision following first-line therapy in advanced non-small cell lung cancerLasch K, Stokes J, Liepa A, Meldahl M, Arnett L, Basch ESupport Care Cancer, 2010;18: S88.OncologyLiterature and COA instrument reviews
2010Responsiveness of the cough and sputum assessment questionnaire in exacerbations of COPD and chronic bronchitisMonz BU, Sachs P, McDonald J, Crawford B, Nivens MC, Tetzlaff KRespir Med, 2010;104: 534-542.View PublicationRespiratory diseasesPsychometric evaluation and statistical analysis of COAs
2010An instrument assessing satisfaction with iron chelation therapy: Psychometric testing from an open-label clinical trialRofail D, Viala M, Gater A, Abetz-Webb L, Baladi JF, Cappellini MDAdvances in Therapy, 2010;27(8):533-546View PublicationHematologyPsychometric evaluation and statistical analysis of COAs
2010Development of a pediatric chronic constipation symptom measure: results of qualitative interviews with children and their parentsAbetz L, Arbuckle R, Carson R, Lewis B, Hunter L J, Shiff S J, Johnston JQuality of Life Research, 2010;19:141-142View PublicationGastroenterology, Pediatric careQualitative patient-centered research and evaluation of COAs
2010Development of the Pediatric Restless Legs Syndrome Severity Scale (P-RLS-SS): A patient-reported outcome measure of pediatric RLS symptoms and impactArbuckle R, Abetz L, Durmer J, Ivaneko A, Owens J, Croenlein J, Bolton K, Moore A, Allen RP, Walters A, Picchietti DSleep Medicine, 2010;11(9):897-906View PublicationCNS/Neurology, Pediatric careCOA instrument development or modification
2010Child and parent reports of symptoms of Irritable Bowel Syndrome with Constipation (IBS-C): results of qualitative interviewsArbuckle R, Lewis BE, Carson R, Abetz L, Johnston J M Value in Health, 2010;13:A373View PublicationGastroenterology, Pediatric careQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2010Self-stigma, empowerment and perceived discrimination among people with schizophrenia in 14 European countries: the GAMIAN-Europe studyBrohan E, Elgie R, Sartorius N, Thornicroft G, GAMIAN-Europe Study GroupSchizophrenia Research, 2010;122(1-3):232-238View PublicationCNS/NeurologyPsychometric evaluation and statistical analysis of COAs
2010Employees with mental health problems: Survey of U.K. employers' knowledge, attitudes and workplace practicesBrohan E, Henderson C, Little K, Thornicroft GEpidemiologia e Psichiatria Sociale, 2010;19(4):326-332View PublicationCNS/NeurologyPsychometric evaluation and statistical analysis of COAs
2010Experiences of mental illness stigma, prejudice and discrimination: a review of measuresBrohan E, Slade M, Clement S, Thornicroft GBMC Health Services Research, 2010;10:80, doi: 10.1186/1472-6963-10-80View PublicationCNS/NeurologyLiterature and COA instrument reviews
2010The symptoms of Irritable Bowel Syndrome with Constipation (IBS-C): results of qualitative interviews with children and their parentsCarson R, Arbuckle R, Abetz L, Lewis BE, Hunter L J, Johnston J, Shiff S JQuality of Life Research, 2010;19:6-7Gastroenterology, Pediatric careQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2010The development of the ascites impact measure questionnaire to assess patient symptoms that trigger a paracentesisCrawford B, Piault E, Corson H, Gotlieb WQuality of Life Research, 2010;19:116OncologyLiterature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2010Quantifying the patient-reported burden of herpes zoster and post-herpetic neuralgia in the UK: practical considerationsGater A, Carroll S, Abetz L, Demuth D, Smith F, Mannan AQuality of Life Research, 2010;19:123View PublicationInfectious diseases, CNS/NeurologyLiterature and COA instrument reviews
2010Fatigue in fibromyalgia: a conceptual model informed by patient interviewsHumphrey L, Arbuckle R, Mease P, Williams D, Samsoe B D, Gilbert CBMC Musculoskeletal Disorders, 2010;11:216, doi: 10.1186/1471-2474-11-216View PublicationCNS/NeurologyQualitative patient-centered research and evaluation of COAs
2010Content Validity of Utility Assessment in Type II Diabetes and Alzheimer's diseaseMcGrath C, Rofail D, Abetz LQuality of Life Research, 2010;19:29CNS/Neurology, Endocrinology/Metabolic diseasesLiterature and COA instrument reviews
2010Using qualitative methods to inform the trade-off between content validity and consistency in utility assessment: the example of type 2 diabetes and Alzheimer's diseaseMcGrath C, Rofail D, Gargon E, Abetz LHealth and Quality of Life Outcomes, 2010;8:23, doi: 10.1186/1477-7525-8-23View PublicationCNS/Neurology, Endocrinology/Metabolic diseasesLiterature and COA instrument reviews
2010Psychometric validation of the ascites impact measure questionnaire to assess patient symptoms that trigger a paracentesisPiault E, Yeh Y, Crawford B, Joulain F, Gotlieb WQuality of Life Research, 2010;19:116OncologyPsychometric evaluation and statistical analysis of COAs
2010Content and psychometric validity of the Eyelash Satisfaction Questionnaire (ESQ) in ChinaCrawford B, Tanaka E, Zhu Y, Burgess S MValue Health, 2010;13: A542.View PublicationDermatologyCOA instrument development or modification, Psychometric evaluation and statistical analysis of COAs
2010Evaluation of the willingness-to-pay for anticancer treatment among Korean patients with metastatic breast cancer: A multicenter, cross-sectional studyLee S, Oh D, Kim S, Chung HC, Ko SK, Crawford B, McDonald J, Ro JJ Clin Oncol, 2010;28: e11517.View PublicationOncologyEvidence synthesis/utility generation
2009.2Symptoms and impact of premenstrual dysphoric disorder (PMDD): concepts and measurementRofail D, Abetz L, Lindermann M, Filonenko A, Colligs A, Endicott JValue in Health, 2009;12:A295View PublicationWomen's healthLiterature and COA instrument reviews
2009.12Improved Patient Satisfaction, Adherence and Health-related Quality of Life with Deferasirox (Exjade®) in β-thalassemia Patients Previously Receiving Other Iron Chelation TherapiesPorter JB, Athanasiou-Metaxa M, Bowden DK, Troncy J, Habr D, Domokos G, Roubert B, Rofail D, Gater A, Baladi JF, Cappellini MDPoster presented at Annual Meeting of the American Society for Hematology, December 2009 Blood, 2009;114(22):2486View PublicationHematologyPsychometric evaluation and statistical analysis of COAs
2009.11Evaluation of the willingness-to-pay for anti-cancer treatment amongst Korean metastatic breast cancer patients: A multicenter, cross-sectional studyOh DY, Kim SB, Chung HC, Lee SY, Ko SK, Crawford B, McDonald J, Ro JPoster session presented at: Korean Association for Clinical Oncology, Seoul, Korea, 21 November 2009OncologyEvidence synthesis/utility generation
2009.05Advanced patient-reported outcomes assessment: psychometric methodsCrawford B, Rosa K, McDonald JShort course presented at ISPOR, May 2009 Psychometric evaluation and statistical analysis of COAs, Literature and COA instrument reviews
2009.05Responsiveness of the Cough And Sputum Assessment Questionnaire (CASA-Q) in patients with COPD and chronic bronchitis recovering from acute exacerbationsTetzlaff K, Sachs P, McDonald J, Crawford B, Nivens C, Monz BPoster 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 PublicationRespiratory diseasesPsychometric evaluation and statistical analysis of COAs
2009Helpseeking and stigma - A broader viewClement S, Brohan E, Thornicroft GThe Psychologist, 2009;22:192CNS/NeurologyLiterature and COA instrument reviews
2009Cost-effectiveness of valsartan in Japan: results from the Jikei heart studyShimizu M, Crawford B, Ikewaki K, Taniguchi I, Kamae I, Dahlof B, Drost P, Mochizuki SValue in Health, 2009;12:A151View PublicationCardiovascularPsychometric evaluation and statistical analysis of COAs
2009Use of "spydergrams" to present and interpret SF-36 health-related quality of life data across rheumatic diseasesStrand V, Crawford B, Singh J, Choy E, Smolen JS, Khanna DAnn Rheum Dis, 2009;68:1800View PublicationMusculoskeletal diseasesPsychometric evaluation and statistical analysis of COAs
2009Public attitudes and the problem of stigmaThornicroft G, Brohan E, Kassam ANew Oxford Textbook of Psychiatry (2nd edition), Oxford University Press, Oxford 2009CNS/NeurologyLiterature and COA instrument reviews
2009Global pattern of experienced and anticipated discrimination against people with schizophrenia: a cross-sectional surveyThornicroft G, Brohan E, Rose D, Sartorius N, Leese M; INDIGO Study GroupLancet, 2009;31;373:408-415View PublicationCNS/NeurologyQualitative patient-centered research and evaluation of COAs
2009Alzheimer's disease treatment: assessing caregiver preferences for mode of treatment deliveryAbetz L, Rofail D, Mertzanis P, Heelis R, Rosa K, Tellefsen C, Roborel de Climens A, McBurney C, Thomas SAdvances in Therapy, 2009;26(6):627-644View PublicationCNS/NeurologyLiterature and COA instrument reviews, Qualitative patient-centered research and evaluation of COAs, COA instrument development or modification, Psychometric evaluation and statistical analysis of COAs
2009How 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/PBSAbraham 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 PValue in Health, 2009;12:A310View PublicationUrology/UrogenitalQualitative patient-centered research and evaluation of COAs
2009Item 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 KValue in Health, 2009;12(5):828-837View PublicationDermatologyPsychometric evaluation and statistical analysis of COAs
2009The psychometric validation of the Sheehan Disability Scale (SDS) in patients with bipolar disorderArbuckle R, Frye MA, Brecher M, Paulsson B, Rajagopalan K, Palmer S, Degl' Innocenti APsychiatry Research, 2009;165(1-2):163-174View PublicationCNS/NeurologyPsychometric evaluation and statistical analysis of COAs
2009Psychometric Evaluation of the Diabetes Symptom Checklist-Revised (DSC-R)-A Measure of Symptom DistressArbuckle R, Humphrey L, Vardeva K, Arondekar B, Danten-Viala M, Scott JA, Snoek FJValue in Health, 2009;12(8):1168-1175View PublicationEndocrinology/Metabolic diseasesPsychometric evaluation and statistical analysis of COAs
2009Psychometric validation of the Oily Skin Self-Assessment Scale (OSSAS) and the Oily Skin Impact Scale (OSIS)Mamolo C, Harness J, Bonner N, Arbuckle RJournal of the American Academy of Dermatology, 2009;60(3):AB16View PublicationDermatologyPsychometric evaluation and statistical analysis of COAs
2009Fibromyalgia fatigue – the development of a conceptual model based on qualitative patient interviewsMease P, Humphrey L, Arbuckle R, Williams D A, Danneskiold-Samsøe B, Gilbert CAnnals of Rheumatic Diseases, 2009;68:759CNS/NeurologyQualitative patient-centered research and evaluation of COAs
2009Fibromyalgia fatigue – development of a conceptual model based on qualitative patient interviewsMease P, Humphrey L, Arbuckle R, Williams DA, Danneskiold-Samsoe B, Gilbert CValue in Health, 2009;12(7):A232View PublicationCNS/NeurologyQualitative patient-centered research and evaluation of COAs
2009Satisfaction and adherence in patients with iron overload receiving iron chelation therapy as assessed by a newly developed patient instrumentRofail D, Abetz L, Viala M, Gait C, Baladi J F, Payne KValue in Health, 2009;12(1):109-117View PublicationHematologyPsychometric evaluation and statistical analysis of COAs
2009Strategy and guidelines for conducting and analyzing patient-reported outcomes in clinical trialsCrawford B, Rosa K, McDonald JShort course presented at ISPOR, May 2009Psychometric evaluation and statistical analysis of COAs, Literature and COA instrument reviews
2009Validation of the sleep impact scale in patients with major depressive disorder and insomniaLasch K, Joish VN, Zhu Y, Rosa K, Qiu C, Crawford BCurr Med Res Opin, 2009;25: 1699.View PublicationCNS/NeurologyPsychometric evaluation and statistical analysis of COAs
2008.12Improved 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 MDPresented at ASH, December 2008 Blood, 2008;112(11):1307View PublicationHematologyPsychometric evaluation and statistical analysis of COAs
2008.11Satisfaction with iron chelation therapy is associated with improved quality of life in patients with iron overloadRofail D, Abetz A, Gater A, Baladi JFPoster presented at ISPOR, November 2008. Value in Health, 2008;11(6):A646View PublicationHematologyPsychometric evaluation and statistical analysis of COAs
2008.11The significance of patient-reported outcomes to facilitate market access during a product’s lifecycleRofail D, Abetz A, Gater A, Brown CPoster presented at ISPOR, November 2008View PublicationLiterature and COA instrument reviews
2008.04Stigma and discriminationThornicroft, G, Metha, N, Brohan, E, Kassam AInt J Ment Health Syst. 2008 Apr 13;2(1):3CNS/NeurologyLiterature and COA instrument reviews
2008Eliciting utility scores for health states associated with Lennox-Gastaut SyndromeYi Y, Verdian L, Oyee J, Tolley K, Heyes AValue in Health vol. 11,6, A606 (2008)View PublicationCNS/Neurology, Rare diseasesEvidence synthesis/utility generation
2008Rufinamide in the adjunctive treatment of Lennox-Gastaut Syndrome (LGS): A cost effectiveness analysisYi Y, Verdian L, Jansen JPValue in Health vol.11,6, A605 (2008)CNS/Neurology, Rare diseasesEconomic models
2008Medical savings accounts in ChinaYi Y, Maynard AEuro Observer 2008; 10(4):12-14View PublicationAccess/HEOR consultancy
2000Patient reported outcomes status update on meaningful score changes to establish endpoint definitions: Challenges, observations, and (some) solutions from the fieldShields ALInvited presentation for the DIA’s 3rd annual meeting on Advancing the Science of Study Endpoints. Washington DC, USAQualitative patient-centered research and evaluation of COAs
2000Managing joint health in haemophilia: perspectives from patients, caregivers, and healthcare professionals to create a patient-reported outcome tool for patients aged 8 years and olderBladen M, Sivasubramaniyam S, Klooster B, Shields A, Khan NPoster presented at World Federation of HemophiliaHematology, Pediatric careQualitative patient-centered research and evaluation of COAs, COA instrument development or modification
2000Comparison of utility indices based on alternative approaches for mapping from EQ-5D-3L to EQ-5D-5LBennett B, Shaw JW, Trigg A, Cocks K, DeRosa M, Taylor F, Kiff C, Noon K, van Hout BPoster presented at EuroQoL Academy MeetingPsychometric evaluation and statistical analysis of COAs
2000A cross-national comparison of utility indices derived from the EQ-5D-3L and a mapping of the EQ-5D-3L to the EQ-5D-5LBennett B, Shaw JW, Trigg A, Cocks K, DeRosa M, Taylor F, van Hout BPoster presented at EuroQoL Academy MeetingPsychometric evaluation and statistical analysis of COAs
2000Quality of life in patients with microsatellite instability or mismatch repair deficient metastatic colorectal cancer treated with nivolumab alone or in combination with ipilimumab: CheckMate 142Van Cutsem E, Dixon M, Taylor F, Sun X, Yip C, Blum SIPoster presented at ESMO CongressOncologyPsychometric evaluation and statistical analysis of COAs
2000Association 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 dataWeber JS, Gogas HJ, Sun X, Yip C, Taylor F, Braverman J, Lobo M, Thakkar PK, Moshyk A, Larkin J, Ascierto PAPoster presented at ASCO Annual MeetingOncologyPsychometric evaluation and statistical analysis of COAs
2000Psychometric evaluation of the Hidradenitis Suppurativa Symptom Assessment (HSSA) and Hidradenitis Suppurativa Impact Assessment (HSIA) in patients with hidradenitis suppurativaKimball A, Banderas B, Taylor F, McDonald J, Skup M, Calimlim BPresented at European Academy of Dermatology and VenereologyDermatology, ImmunologyPsychometric evaluation and statistical analysis of COAs