PATIENT PARTICIPATION IN DECISION MAKING ABOUT DISEASE MODIFYING ANTI-RHEUMATIC DRUGS: PERCEIVED AND PREFERRED ROLES OF PATIENTS

Purpose: This study explores what role patients with rheumatic diseases perceive and prefer to have in decisions about Disease-Modifying Anti-Rheumatic Drugs (DMARD's) and what the concordance between preferred and perceived role in these decisions is.

Methods: Patients (n=519) diagnosed with Rheumatoid Arthritis, Arthritis Psoriatica or Ankylosis Spondylitis from two hospitals in the Netherlands filled out a questionnaire. Questions included perceived and preferred role in medical decision making in general, and in four specific decision-categories: starting to use traditional DMARD's, starting to inject a DMARD, starting to use biological DMARD's and decrease or stop using DMARD's.

Results: Most respondents perceived that, in current practice, treatment decisions in general were made by the doctor (43%) or by the doctor and patient together (55%). However, the perceived roles varied per decision-category: e.g. most patients (72%) felt that the decision to start using a traditional DMARD was made by the doctor, whereas the decision to decrease or stop using DMARD's was more often perceived as being made by the patients themselves (24%) or by doctor and patient together (38%).   The preferred roles were, contrary to the perceived roles, consistent across the decision-categories. Most respondents (59-63%) preferred to share decisions with their doctor. By using a paired sample t-test the concordance between the perceived and preferred role was evaluated. Table 1 shows that there was a significant difference in 4 of 5 decision-categories. Only the decision to decrease or stop using DMARD's had no significant difference between perceived and preferred role.

For a considerable group the perceived and preferred participation for decision making in general matched (61%); about one third (29%) perceived less participation than preferred and a minority perceived more participation than preferred. Again, the concordance varied across the decision-categories. Especially for the decision to start with a traditional DMARD, many respondents had experienced less participation than they preferred (54%).

Conclusions: Although patients seem consistent in their preference for participation in various DMARD-decisions, the amount of perceived participation varied across the different decisions. Patients should especially be more involved in decisions about starting to use a traditional DMARD.  Patient Decision aids might be helpful tools to increase patient participation.