OMERACT 健康调整生命年（QALY）工作组：当前的 QALY 衡量标准是否能反映患者关注的问题？
OMERACT Quality-adjusted Life-years (QALY) Working Group: Do Current QALY Measures Capture What Matters to Patients?
机构信息
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.
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.
出版信息
J Rheumatol. 2017 Dec;44(12):1899-1903. doi: 10.3899/jrheum.161112. Epub 2017 Mar 15.
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.
目的
了解当前用于生成风湿病学质量调整生命年（QALY）的患者报告结局测量（PROM）的局限性，并制定研究议程。
方法
开展了两项活动。第一项是对 2011 年至 2016 年期间使用 PROM 生成风湿病学 QALY 的已发表研究进行的范围综述。第二项是在风湿病学结局测量 13 上进行的互动“目测测试”练习，该练习将通过范围综述确定的广泛使用的通用 PROM 的子领域与强直性脊柱炎专用 PROM（ASAS-HI）的子领域进行比较。
结果
范围综述包括 39 项研究。五种不同的 PROM 已用于生成风湿病学的 QALY；然而，EQ-5D 和简短形式 6 维度（SF-6D）使用最频繁（分别在 32 项和 9 项研究中使用）。特别兴趣小组参与者确定能量/动力和睡眠是 ASAS-HI 仪器的 2 个关键子领域，可能会被 EQ-5D 遗漏，性功能可能会被 SF-6D 遗漏。参与者还表示担心可能会遗漏护理过程和非健康结果的某些方面。讨论了三种纳入其他子领域的方法，包括使用替代的通用 PROM、使用“附加”子领域修改现有的通用 PROM 以及为特定疾病的 PROM 生成社会权重。
结论
确定了未来研究的三个优先事项：了解 EQ-5D 和 SF-6D 是否确定了不同风湿性疾病患者的重要事项，分析患者对过程或非健康结果的重视程度，以及确定在其他疾病领域正在采用哪些方法将更多子领域纳入 QALY。
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