INTRODUCTIONThe objective of this study was to determine if patient information needs are being met and the level of patient satisfaction with rheumatology practitioners in participatory decision-making and thereby indirectly explore whether concordance was achieved.

MATERIALS AND METHODSThe design was a cross-sectional postal questionnaire survey of 420 patients attending outpatient clinics at the Norfolk and Norwich University Hospital who were taking disease modifying anti-rheumatic drugs (DMARDs) or a biological treatment. The population served is ethnically homogeneous and predominantly Caucasian.

RESULTSThe response rate was 76%. Most respondents (79%) had inflammatory arthritis while 66% had rheumatoid arthritis. Seventy-seven per cent of patients reported that the rationale behind commencing treatment was explained and that they were given ample opportunities to ask questions. Eighty-two per cent said they were given an appropriate amount of information. Sixty-four per cent of patients were satisfied with their level of participation in the decision-making process, although a substantial number (25%) said that information from different sources was conflicting. There was no correlation between concern about side effects and patients' perceptions of the effectiveness of medication. Females were more concerned than males about possible side effects; P =0.009, using the Mann-Whitney U test. One third of the patients altered their medication in response to whether their arthritis felt better or worse.

CONCLUSIONThe majority of patients were satisfied that their information needs were met and with the care provided in the practitioner clinic. Participatory decision-making was sub-optimal despite patient satisfaction with the amount of time allocated to meeting their information needs. We found that patients exercise autonomy in managing their arthritis by regulating their medications through an active decision-making process, which is informed by their previous experience of medication, and how well controlled they felt their arthritis was. Research into this decision-making process may hold the key to achieving concordance.