Outcomes from the Patient Perspective Workshop at OMERACT 6.
The objective of the Patient Perspective Workshop at OMERACT 6 was to address the question of assessing the outcomes of intervention in rheumatoid arthritis (RA) from the perspective of those who experience the disease themselves. This was done by reviewing the current state of research in the area, identifying the requirements for the development of valid instruments, delineating a research agenda that can attain these requirements, and motivating participants to undertake the appropriate research. Through a series of meetings and discussion sessions a research agenda emerged that includes: exploring subjective experiences of RA identified by patients as important but not encompassed within the current "core set" of outcome measures (such as a sense of well being, fatigue, and disturbed sleep); clarifying terminology; and empowering patients to be more effective partners in outcomes research. These were supported by the OMERACT plenary session. Specific actions were required by both patient participants and organizers to ensure the nature of the conference, its focus and method of working were understood, and that the patient participants were sufficiently confident to make their contribution.
Kirwan
John
J
University of Bristol Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK.
Heiberg
Turid
T
Hewlett
Sarah
S
Hughes
Rod
R
Kvien
Tore
T
Ahlmèn
Monica
M
Boers
Maarten
M
Minnock
Patricia
P
Saag
Kenneth
K
Shea
Beverley
B
Suarez Almazor
Maria
M
Taal
Erik
E
D001172:Arthritis, Rheumatoid / Q000188:drug therapy* / Q000523:psychology*; D006801:Humans; D010043:Outcome and Process Assessment, Health Care / Q000379:methods* / Q000592:standards; D016032:Randomized Controlled Trials as Topic / Q000379:methods / Q000523:psychology* / Q000592:standards; D012219:Rheumatology / Q000379:methods / Q000592:standards*