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Rheumatology Advance Access originally published online on September 20, 2004
Rheumatology 2005 44(1):105-110; doi:10.1093/rheumatology/keh412
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Rheumatology Vol. 44 No. 1 © British Society for Rheumatology 2004; all rights reserved

PAPER

Rheumatology outcomes: the patient's perspective. A multicentre focus group interview study of Swedish rheumatoid arthritis patients

M. Ahlmén, U. Nordenskiöld, B. Archenholtz, I. Thyberg1, R. Rönnqvist2, L. Lindén2, A.-K. Andersson3 and K. Mannerkorpi

Department of Rheumatology, Sahlgrenska University Hospital/SU, Göteborg and Mölndal, 1 Linköping University Hospital, Linköping, 2 Karolinska University Hospital/KS, Stockholm and 3 Spenshult Rheumatology Hospital, Oskarström, Sweden.

Correspondence to: M. Ahlmén, Department of Rheumatology, SU/Göteborg and Mölndal, Box 1094, SE–436 22 Askim, Sweden. E-mail: em.ahlmen{at}telia.com

Objectives. Patients with rheumatoid arthritis (RA) and clinicians have different views about benefits from treatments. More knowledge is needed about how patients assess outcomes in order to update current measurements.

Methods. Focus group interviews were performed at four Swedish rheumatology clinics. A total of 25 patients with RA were included, representing a wide range of ages and disease duration. Predetermined topics relating to important outcomes from and satisfaction/dissatisfaction with RA treatments were discussed.

Results. The participants’ initial outcome assessments included physical and psychosocial items, which comprised overall treatment goals such as impairment in social roles, fatigue, daily activities and self-confidence. The identified themes were ‘Normal life’, ‘Physical capacity’, ‘Independence’ and ‘Well-being’. Satisfaction with treatment was associated with the quality of communication between staff and the patient. The participants assumed this as a prerequisite for a treatment to work. Patients wanted to be accepted as experts on their own bodies, and expected all clinicians to be experts on RA. This made it possible for patients to ‘take charge’ of their life situation. Good resources for and access to rheumatology care were desired.

Conclusions. Suggesting a holistic approach to rheumatology care, the study results indicate that the illness and outcomes have to be evaluated within an individual RA patient's total life situation, described in the identified themes: ‘Normal life’, ‘Physical capacity’, ‘Independence’ and ‘Well-being’. Development and validation of measurements covering these issues is suggested. More research is needed about communication and how patients experience their roles in the rheumatology clinic.

KEY WORDS: Rheumatoid arthritis, Qualitative research, Focus groups, Outcome assessment, Patient perspectives


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