PT  - JOURNAL ARTICLE
AU  - John Kirwan
AU  - Turid Heiberg
AU  - Sarah Hewlett
AU  - Rod Hughes
AU  - Tore Kvien
AU  - Monica Ahlmèn
AU  - Maarten Boers
AU  - Patricia Minnock
AU  - Kenneth Saag
AU  - Beverley Shea
AU  - Maria Suarez Almazor
AU  - Erik Taal
TI  - Outcomes from the Patient Perspective Workshop at OMERACT 6.
DP  - 2003 Apr 01
TA  - The Journal of Rheumatology
PG  - 868--872
VI  - 30
IP  - 4
4099  - http://www.jrheum.org/content/30/4/868.short
4100  - http://www.jrheum.org/content/30/4/868.full
SO  - J Rheumatol2003 Apr 01; 30
AB  - 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.