Shared Decision-Making in rheumatology: What matters to patients?

Shared decision-making (SDM) is seen as a key element of high quality modern medicine. To support the SDM process and prepare patients to make medical decisions in collaboration with their clinician, Patient Decision Aids (PtDAs) can be used.
This dissertation focuses on the perspective of patients on SDM in the setting of rheumatology care and the development of a PtDA in co-creation with patients and health professionals.
With the use of qualitative and quantitative research methods, we gained knowledge about patients’ perspectives of SDM in rheumatology. The results showed that, in rheumatology care, the majority of patients prefers to be involved in medical decision-making. Yet, our interviews showed that many patients find it difficult to determine their preference regarding this subject and that it may vary between and within individuals, depending on the situation.
These studies also revealed that SDM is frequently perceived in rheumatology outpatient care. Yet, there is room for improvement. A considerable group of patients would have liked more participation than they had experienced. Especially newly diagnosed patients who faced the decision to initiate anti-rheumatic drugs desired more participation in decision-making.
With the early, iterative involvement of patients and health professionals a web-based PtDA was developed that allowed patients to choose between DMARDs. A post-test only study with a historical comparison group revealed that relative to the comparison group, patients in the intervention group perceived a more active role in medical decision-making and decisions were more in line with patients’ personal preferences. Furthermore, patients highly appreciated the PtDA and perceived it as easy to use and helpful in the decision-making process.
In conclusion, the project described in this dissertation has resulted in the successful development of a PtDA that has demonstrated its high potential to be a valuable aid in improving patient participation in rheumatology care. The supportive studies described in this dissertation provide valuable knowledge about patients’ perceptions of SDM in the field of rheumatology. We have successfully verified that the combination of methods was helpful in developing a user-friendly novel application and creating support for the adoption of the PtDA.