Logan Trenaman1,2, Annelies Boonen1,2, Francis Guillemin1,2, Mickael Hiligsmann1,2, Alison Hoens1,2, Carlo Marra1,2, Will Taylor1,2, Jennifer Barton1,2, Peter Tugwell1,2, George Wells1,2, Nick Bansback3,4. 1. From the School of Population and Public Health, and Department of Physical Therapy, University of British Columbia; Centre for Health Evaluation and Outcome Sciences, St. Paul's Hospital; Arthritis Patient Advisory Board, Arthritis Research Canada, Vancouver, British Columbia; School of Pharmacy, Memorial University, St. John's, Newfoundland; Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada; Department of Internal Medicine, Division of Rheumatology, Maastricht University Medical Center and Graduate School, Care and Public Health Research Institute (CAPHRI), Maastricht University; Department of Health Services Research, CAPHRI, Maastricht University, Maastricht, the Netherlands; Université de Lorraine, Université Paris Descartes, EA 4360 APEMAC, Nancy, France; Department of Medicine, University of Otago Wellington, Wellington, New Zealand; School of Medicine, Oregon Health and Science University, Portland, Oregon, USA. 2. L. Trenaman, MSc, School of Population and Public Health, University of British Columbia, and the Centre for Health Evaluation and Outcome Sciences, St. Paul's Hospital; A. Boonen, MD, PhD, Department of Internal Medicine, Division of Rheumatology, Maastricht University Medical Center and Graduate School, CAPHRI, Maastricht University; F. Guillemin, MD, PhD, Université de Lorraine, Université Paris Descartes, EA 4360 APEMAC; M. Hiligsmann, PhD, Department of Health Services Research, Maastricht University, CAPHRI; A. Hoens, BScPT, MSc, Department of Physical Therapy, University of British Columbia, and Arthritis Patient Advisory Board, Arthritis Research Canada; C. Marra, PharmD, PhD, School of Pharmacy, Memorial University; W. Taylor, MBChB, PhD, FRACP, FAFRM, Department of Medicine, University of Otago; J. Barton, MD, School of Medicine, Oregon Health and Science University; P. Tugwell, MD, MSc, FRCPC, Department of Medicine, University of Ottawa; G. Wells, PhD, Department of Medicine, University of Ottawa; N. Bansback, PhD, School of Population and Public Health, University of British Columbia, and Centre for Health Evaluation and Outcome Sciences, St Paul's Hospital. 3. From the School of Population and Public Health, and Department of Physical Therapy, University of British Columbia; Centre for Health Evaluation and Outcome Sciences, St. Paul's Hospital; Arthritis Patient Advisory Board, Arthritis Research Canada, Vancouver, British Columbia; School of Pharmacy, Memorial University, St. John's, Newfoundland; Department of Medicine, University of Ottawa, Ottawa, Ontario, Canada; Department of Internal Medicine, Division of Rheumatology, Maastricht University Medical Center and Graduate School, Care and Public Health Research Institute (CAPHRI), Maastricht University; Department of Health Services Research, CAPHRI, Maastricht University, Maastricht, the Netherlands; Université de Lorraine, Université Paris Descartes, EA 4360 APEMAC, Nancy, France; Department of Medicine, University of Otago Wellington, Wellington, New Zealand; School of Medicine, Oregon Health and Science University, Portland, Oregon, USA. nick.bansback@ubc.ca. 4. L. Trenaman, MSc, School of Population and Public Health, University of British Columbia, and the Centre for Health Evaluation and Outcome Sciences, St. Paul's Hospital; A. Boonen, MD, PhD, Department of Internal Medicine, Division of Rheumatology, Maastricht University Medical Center and Graduate School, CAPHRI, Maastricht University; F. Guillemin, MD, PhD, Université de Lorraine, Université Paris Descartes, EA 4360 APEMAC; M. Hiligsmann, PhD, Department of Health Services Research, Maastricht University, CAPHRI; A. Hoens, BScPT, MSc, Department of Physical Therapy, University of British Columbia, and Arthritis Patient Advisory Board, Arthritis Research Canada; C. Marra, PharmD, PhD, School of Pharmacy, Memorial University; W. Taylor, MBChB, PhD, FRACP, FAFRM, Department of Medicine, University of Otago; J. Barton, MD, School of Medicine, Oregon Health and Science University; P. Tugwell, MD, MSc, FRCPC, Department of Medicine, University of Ottawa; G. Wells, PhD, Department of Medicine, University of Ottawa; N. Bansback, PhD, School of Population and Public Health, University of British Columbia, and Centre for Health Evaluation and Outcome Sciences, St Paul's Hospital. nick.bansback@ubc.ca.
Abstract
OBJECTIVE: To understand the limitations with current patient-reported outcome measures (PROM) used to generate quality-adjusted life-years (QALY) in rheumatology, and set a research agenda. METHODS: Two activities were undertaken. The first was a scoping review of published studies that have used PROM to generate QALY in rheumatology between 2011 and 2016. The second was an interactive "eyeball test" exercise at Outcome Measures in Rheumatology 13 that compared subdomains of widely used generic PROM, as identified through the scoping review, to subdomains of the Assessment of SpondyloArthritis Health Index (ASAS-HI) condition-specific PROM for ankylosing spondylitis. RESULTS: The scoping review included 39 studies. Five different PROM have been used to generate QALY in rheumatology; however, the EQ-5D and Short Form 6 Dimensions (SF-6D) were used most frequently (in 32 and 9 of included studies, respectively). Special interest group participants identified energy/drive and sleep as 2 key subdomains of the ASAS-HI instrument that may be missed by the EQ-5D, and sexual function as potentially missed by the SF-6D. Participants also expressed concerns that aspects of the process of care and non-health outcomes may be missed. Three ways of incorporating additional subdomains were discussed, including using an alternative generic PROM, modifying an existing generic PROM with "bolt-on" subdomain(s), and generating societal weights for a condition-specific PROM. CONCLUSION: Three priorities for future research were identified: understanding whether the EQ-5D and SF-6D identify what matters to patients with different rheumatic conditions, analyzing how much patients value process or non-health outcomes, and identifying which approaches to incorporating a greater number of subdomains into the QALY are being undertaken in other disease areas.
OBJECTIVE: To understand the limitations with current patient-reported outcome measures (PROM) used to generate quality-adjusted life-years (QALY) in rheumatology, and set a research agenda. METHODS: Two activities were undertaken. The first was a scoping review of published studies that have used PROM to generate QALY in rheumatology between 2011 and 2016. The second was an interactive "eyeball test" exercise at Outcome Measures in Rheumatology 13 that compared subdomains of widely used generic PROM, as identified through the scoping review, to subdomains of the Assessment of SpondyloArthritis Health Index (ASAS-HI) condition-specific PROM for ankylosing spondylitis. RESULTS: The scoping review included 39 studies. Five different PROM have been used to generate QALY in rheumatology; however, the EQ-5D and Short Form 6 Dimensions (SF-6D) were used most frequently (in 32 and 9 of included studies, respectively). Special interest group participants identified energy/drive and sleep as 2 key subdomains of the ASAS-HI instrument that may be missed by the EQ-5D, and sexual function as potentially missed by the SF-6D. Participants also expressed concerns that aspects of the process of care and non-health outcomes may be missed. Three ways of incorporating additional subdomains were discussed, including using an alternative generic PROM, modifying an existing generic PROM with "bolt-on" subdomain(s), and generating societal weights for a condition-specific PROM. CONCLUSION: Three priorities for future research were identified: understanding whether the EQ-5D and SF-6D identify what matters to patients with different rheumatic conditions, analyzing how much patients value process or non-health outcomes, and identifying which approaches to incorporating a greater number of subdomains into the QALY are being undertaken in other disease areas.
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