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 (DMARDs) and what the concordance between preferred and perceived role in these decisions is.

Method: Patients (n = 519) diagnosed with Rheumatoid Arthritis, Arthritis Psoriatica or Ankylosis Spondylitis from 2 hospitals in the Netherlands filled out a questionnaire. Questions included perceived and preferred role in medical decision making in general, and in 4 specific decision-categories: starting to use traditional DMARDs, starting to inject a DMARD, starting to use biological DMARDs and decrease or stop using DMARDs.

Result: 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 DMARDs 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%).

Conclusion: 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.