RT Journal Article
SR Electronic
T1 Outcomes from the Patient Perspective Workshop at OMERACT 6.
JF The Journal of Rheumatology
JO J Rheumatol
FD The Journal of Rheumatology
SP 868
OP 872
VO 30
IS 4
A1 John Kirwan
A1 Turid Heiberg
A1 Sarah Hewlett
A1 Rod Hughes
A1 Tore Kvien
A1 Monica Ahlmèn
A1 Maarten Boers
A1 Patricia Minnock
A1 Kenneth Saag
A1 Beverley Shea
A1 Maria Suarez Almazor
A1 Erik Taal
YR 2003
UL http://www.jrheum.org/content/30/4/868.abstract
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.