Abstract: Incorporating the Patient Perspective into Outcome Assessment in Rheumatoid Arthritis

Incorporating the Patient Perspective into Outcome Assessment in Rheumatoid Arthritis — Progress at OMERACT 7

JOHN R. KIRWAN, SARAH E. HEWLETT, TURID HEIBERG, ROD A. HUGHES, MAGGIE CARR, MAGGIE HEHIR, TORE K. KVIEN, PATRICIA MINNOCK, STANTON P. NEWMAN, ENID M. QUEST, ERIK TAAL, and JANNEY WALE

ABSTRACT.

The Patient Perspective Workshop at OMERACT 7 addressed the question of assessing the outcomes of intervention in rheumatoid arthritis (RA) from the perspective of those who experience the disease. A particular emphasis at this workshop was placed on fatigue, but other areas included well-being, real-time assessment, patient priorities, and needs in early and late disease. Through a series of overview presentations, discussion groups, and plenary sessions, workshop participants (who included 19 patients) clarified what is known and what are the outstanding issues for future research. The importance of further work on clarifying the validity of fatigue measurements in RA has been confirmed, and with at least one suitable instrument available there will be strong pressure to include fatigue in a redefined core set of outcome measures in RA. In the other 4 areas covered there are important issues that can be addressed by enquiry and experiment and that together provide a challenging research agenda. At the final plenary session the OMERACT conference endorsed, by a large majority, the proposal that fatigue may warrant consideration for inclusion in the OMERACT core set for RA. (J Rheumatol 2005;32:2250-6)

Key Indexing Terms:

FATIGUE
WELL-BEING
REAL-TIME ASSESSMENT
PATIENT PRIORITIES

From the University of Bristol Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK; Centre for Education and Skills Training, Ullevål University Hospital, Oslo, Norway; St. Peters Hospital NHS Trust, Chertsey, UK; Oslo City Department of Rheumatology, Diakonhjemmet Hospital, Oslo, Norway; Centre for Behavioural and Social Sciences in Medicine, University College London, UK; Department of Rheumatology, Our Lady's Hospice and St. Vincent's University Hospital, Dublin, Ireland; Department of Clinical Epidemiology and Biostatistics, Free University Hospital, Amsterdam, The Netherlands; and Effective Musculoskeletal Health Consumer Project, Faculty of Health Sciences, Royal Brisbane Hospital, Brisbane, Australia.

J.R. Kirwan*, BSc, MD; S.E. Hewlett*, PhD, University of Bristol Academic Rheumatology Unit; T. Heiberg*, MSN, Centre for Education and Skills Training, Ullevål University Hospital; R.A. Hughes, MD, St. Peters Hospital NHS Trust; M. Carr, MSc, RGN, St. Peters Hospital NHS Trust; M. Hehir, MA, RGN, RMN, University of Bristol Academic Rheumatology Unit; T.K. Kvien*, MD, Oslo City Department of Rheumatology, Diakonhjemmet Hospital; P. Minnock, MSc, Department of Rheumatology, Our Lady's Hospice and St. Vincent's University Hospital; S.P. Newman, DPhil, Dip Psych, Centre for Behavioural and Social Sciences in Medicine, University College London; E.M. Quest*, University of Bristol Academic Rheumatology Unit; E. Taal, PhD, Department of Communications, University of Twente; J. Wale, Royal Brisbane Hospital. *Member of the Organizing Group.

Address reprint requests to Prof. J.R. Kirwan, University of Bristol Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol BS2 8HW, UK. E-mail: john.kirwan@bristol.ac.uk