To explore what considerations patients have when deciding about disease-modifying antirheumatic drugs (DMARDs) and what information patients need to participate in the decision-making process.
In-depth face-to-face interviews were conducted with 32 patients with inflammatory arthritis who recently consulted their rheumatologist and discussed initiating DMARDs.
Beliefs in the necessity of DMARDs, either for relief of symptoms or prevention of future joint damage, were reasons to initiate DMARDs. Furthermore, trust in the rheumatologist and the health care system was important in this respect. Patients expressed many concerns about initiating DMARDS. These related to the perceived aggressive and harmful nature of DMARDs, potential (or unknown) side effects, influence on fertility and pregnancy, combination with other medicines, time to benefit, and manner of administration. Participants also worried about the future regarding long-term medication use and drug dependency, and if a medicine proved to be ineffective, about the risks of future treatments and running out of options. To decrease uncertainty, participants wanted to be informed about multiple treatment options, both current and future. They not only wanted clinical information but also information on how the medications could affect their daily lives.
Health education should inform patients about multiple treatment options, for the present as well as for the future. It should enable patients to compare treatments with regard to both clinical aspects as well as possible consequences for their daily lives.