Focus group interviews reveal reasons for differences in the perception of disease activity in rheumatoid arthritis

Margot J. M. Walter, Adriaan van’t Spijker, Annelieke Pasma, Johanna M. W. Hazes, Jolanda J. Luime

Doctors frequently see patients who have difficulties coping with their disease and rate their disease activity high, despite the fact that according to the doctors, the disease activity is low. This study explored the patients' perspectives on this discordance that may help to understand why for some patients, usual care seems to be insufficient. In our qualitative study we conducted focus group interviews where questions were used as a guideline. Transcripts were analyzed using inductive thematic analysis. Twenty-nine patients participated in four focus groups. Participants could not put their finger exactly on why doctors estimated that their disease activity was low, while they experienced high levels of disease activity. During the in-depth focus interviews, seven themes emerged that appeared related to high experienced disease activity: (1) perceived stress, (2) balancing activities and rest, (3) medication intake, (4) social stress, (5) relationship with professionals, (6) comorbidity, and (7) physical fitness. When patients were asked why their view of their disease activity was different from that of their physician, seven themes emerged. The way participants coped with these themes seemed to be the predominant concept. Specific interventions that focus on one or more of the reported themes and on coping may improve not only the quality of life of these patients but also the satisfaction with the patient-doctor relationship for both parties.