Patient Perspective Workshop: Moving Towards OMERACT Guidelines for Choosing or Developing Instruments to Measure Patient-Reported Outcomes

被引:25
作者
Kirwan, John R. [1 ]
Fries, James F. [2 ]
Hewlett, Sarah E. [3 ]
Osborne, Richard H. [4 ]
Newman, Stanton [5 ]
Ciciriello, Sabena [6 ]
van de laar, Mart A. [7 ]
Dures, Emma [3 ]
Minnock, Patricia [8 ]
Heiberg, Turid [9 ]
Sanderson, Tessa C. [3 ]
Flurey, Caroline A. [3 ]
Leong, Amy L. [10 ]
Montie, Pamela [11 ]
Richards, Pam
机构
[1] Univ Bristol, Bristol Royal Infirm, Acad Rheumatol Unit, Bristol, Avon, England
[2] Stanford Univ, Sch Med, Palo Alto, CA 94304 USA
[3] Univ W England, Acad Rheumatol Unit, Bristol Royal Infirm, Bristol BS16 1QY, Avon, England
[4] Deakin Univ, Melbourne, Vic, Australia
[5] Univ London, Ctr Behav & Social Sci Med, London, England
[6] Univ Melbourne, Royal Melbourne Hosp, Ctr Rheumat Dis, Dept Med, Melbourne, Vic 3050, Australia
[7] Univ Twente, Arthrit Ctr Twente, NL-7500 AE Enschede, Netherlands
[8] Our Ladys Hosp Sick Children, Dublin, Ireland
[9] Oslo Univ Hosp, Lovisenberg Diakonal Coll, Oslo, Norway
[10] Healthy Motivat & Bone & Joint Decade, Santa Barbara, CA USA
[11] Arthrit Res Ctr, Consumer Advisory Board, Vancouver, BC, Canada
基金
英国医学研究理事会;
关键词
PATIENT REPORTED OUTCOMES; CONSENSUS DEVELOPMENT; CLINICAL TRIALS; SYSTEMIC-LUPUS-ERYTHEMATOSUS; RHEUMATOID-ARTHRITIS; MEASURING FATIGUE; QUESTIONNAIRE; UNCERTAINTY; HEALTH; INTERVENTIONS; EXPERIENCE; QUALITY; DESIGN;
D O I
10.3899/jrheum.110391
中图分类号
R5 [内科学];
学科分类号
1002 ; 100201 ;
摘要
The workshop Choosing or Developing Instruments held at the Outcome Measures in Rheumatology (OMERACT) 10 meeting was designed to help participants think about the underlying methods of instrument development. Conference pre-reading material and 3 brief introductory presentations elaborated the issues, and participants broke into discussion groups before reconvening to share insights, engage in a more general discussion of the issues, and vote on recommendations: Tradeoffs between using current imperfect measures and the long and complex process of developing new instruments were considered, together with the need for rigor in patient-reported outcome (PRO) instrument development. The main considerations for PRO instrument development Were listed and a research agenda for action produced. As part of the agenda for action, it is recommended that re:searchers and patient partners work together to tackle these issues, and that OMERACT bring forward proposals for acceptable instrument development protocols that would meet an enhanced "Truth" statement in the OMERACT Filter. (J Rheumatol 2011;38:1711-15; doi:10.3899/jrheum.110391)
引用
收藏
页码:1711 / 1715
页数:5
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