Abstract: Progress Since OMERACT 6 on Including Patient Perspective in Rheumatoid Arthritis Outcome Assessment

Progress Since OMERACT 6 on Including Patient Perspective in Rheumatoid Arthritis Outcome Assessment

JOHN R. KIRWAN, MONICA AHLMÉN, MAARTEN DE WIT, TURID HEIBERG, MAGGIE HEHIR, SARAH HEWLETT, PATRICIA P. KATZ, PATRICIA MINNOCK, ENID M. QUEST, and PAM RICHARDS

ABSTRACT.

The first OMERACT Patient Perspective Workshop took place at OMERACT 6 in 2002. Through a series of meetings and discussion sessions a research agenda emerged and this report outlines progress made on this agenda. Work on identifying novel outcomes, instruments, and methods has shown similarities across European countries in the importance patients with rheumatoid arthritis (RA) attach to specific outcomes, in particular fatigue. Validation of an appropriate instrument to measure fatigue in patients with RA is currently being investigated. Frequent or repeated real-time assessment of symptoms such as pain and fatigue is becoming possible using electronic systems. An OMERACT Patient Panel has been established, and has produced a glossary for patients involved in supporting clinical research. In some centers, efforts are being made to provide Patient Research Partners with knowledge and skills that will enhance their contribution, and some of these approaches will be incorporated into OMERACT 7. The research agenda that was developed during the first Patient Perspective Workshop has stimulated new work in several areas. In addition, international attention has been drawn to the need to make sure that the patient's perspective is not lost among the technical expertise of rheumatology. (J Rheumatol 2005;32:2246-9)

Key Indexing Terms:

CONSUMER
INSTRUMENTS
FATIGUE
REAL-TIME ASSESSMENT

From the University of Bristol, Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol, UK; Department of Rheumatology, Sahlgrenska University Hospital/M, Mölndal, Sweden; the Dutch Arthritis Patients' League, Holland; Centre for Education and Skills Training, Ullevål University Hospital, Oslo, Norway; Department of Medicine, Division of Rheumatology, University of California, San Francisco, San Francisco, USA; and Department of Rheumatology, Our Lady's Hospice and St. Vincent's University Hospital, Dublin, Ireland.

J.R. Kirwan, BSc, MD, University of Bristol Academic Rheumatology Unit; M. Ahlmén, MD, PhD, Department of Rheumatology, Sahlgrenska University Hospital/M; M. de Wit, Dutch Arthritis Patients' League; T. Heiberg, MSN, Centre for Education and Skills Training, Ullevål University Hospital; M. Hehir, MA, RGN, RMN, University of Bristol Academic Rheumatology Unit; S. Hewlett, PhD, University of Bristol Academic Rheumatology Unit; P.P. Katz, PhD, Department of Medicine, Division of Rheumatology, University of California; P. Minnock, MSc, Department of Rheumatology, Our Lady's Hospice and St. Vincent's University Hospital; E.M. Quest; P. Richards, University of Bristol Academic Rheumatology Unit.

Address reprint requests to Prof. J.R. Kirwan, University of Bristol Academic Rheumatology Unit, Bristol Royal Infirmary, Bristol BS2 8HW, UK.