Outcomes from the Patient Perspective Workshop at OMERACT 6

JOHN KIRWAN, TURID HEIBERG, SARAH HEWLETT, ROD HUGHES, TORE KVIEN, MONICA AHLMÈN, MAARTEN BOERS, PATRICIA MINNOCK, KENNETH SAAG, BEVERLEY SHEA, MARIA SUAREZ ALMAZOR, and ERIK TAAL

ABSTRACT.

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. (J Rheumatol 2003;30:868-72)

Key Indexing Terms:

RANDOMIZED CONTROLLED TRIAL
RHEUMATOID ARTHRITIS
OUTCOME AND PROCESS ASSESSMENT
PATIENT PARTICIPATION

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From Academic Rheumatology, University of Bristol Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK; Nursing Director's Department, Ullevål University Hospital, Oslo, Norway; St. Peters Hospital NHS Trust, Chertsey, UK; Oslo City Department of Rheumatology, Diakonhjemmet Hospital, Oslo, Norway; Sahlgrenska University Hospital, Molndal, Sweden; Department of Clinical Epidemiology and Biostatistics, Free University Hospital, Amsterdam, The Netherlands; St. Vincents University Hospital, Dublin, Ireland; University of Alabama at Birmingham, Birmingham, Alabama, USA; Institute of Population Health, University of Ottawa, Ottawa, Canada; Baylor College of Medicine, Houston, Texas, USA; Department of Communications, University of Twente, The Netherlands.

J. Kirwan, MD, Academic Rheumatology, University of Bristol Rheumatology Unit; T. Heilberg, MSN, Nursing Director's Department, Ullevål University Hospital; S. Hewlett, PhD, Academic Rheumatology, University of Bristol Rheumatology Unit; R. Hughes, MD, St. Peters Hospital NHS Trust; T. Kvien, MD, Oslo City Department of Rheumatology, Diakonhjemmet Hospital; M. Ahlmèn, MD, Sahlgrenska University Hospital; M. Boers, MD, Department of Clinical Epidemiology and Biostatistics, Free University Hospital; P. Minnock, MSc, St. Vincents University Hospital; K. Saag, MD, University of Alabama at Birmingham; B. Shea, MSc, Institute of Population Health, University of Ottawa; M. Suarez Almazor, MD, Baylor College of Medicine; E. Taal, PhD, Department of Communications, University of Twente. Members of organizing group: J. Kirwan, T. Heilberg, S. Hewlett, R. Hughes, T. Kvien.

Address reprint requests to Dr. J. Kirwan, Academic Rheumatology, University of Bristol Rheumatology Unit, Bristol Royal Infirmary, Bristol, BS2 8HW, UK. E-mail: John.Kirwan@Bristol.ac.uk

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