Shared decision-making in rheumatology: What matters to patients?
Patients with inflammatory arthritis see their health professionals less than one hour per year. The rest of the time they must cope, on their own and in their own environment, with the erratic symptoms and side effects of treatment. These circumstances make it essential that patients are involved in their care and that patients’ preferences are included in treatment decision-making. The choice of treatment should be based on a shared decision between the patient and rheumatologist.
Shared decision-making (SDM) is seen as a key element of high quality modern medicine. This means that, in collaboration, the patient and health professional choose the best treatment by weighing and balancing the medical knowledge and patient’s values. To support the SDM process and prepare patients to make medical decisions in collaboration with their clinician, Patient Decision Aids (PtDAs) can be used. They support patients in clarifying and expressing their values, worries and preferences in order to become an active and informed member of the decision-making process.
SDM research has extensively focused on the general population, acute care settings and for one-time decisions, for example, governing screening or surgery. PtDAs have been developed for a variety of medical decisions and have shown to be effective. However, little is known about SDM and the role of PtDAs in the setting of rheumatology care. Therefore, this PhD project focused on the perspective of inflammatory arthritis patients on SDM and the development of a PtDA in co-creation with patients and health professionals. As part of the stepwise user-centred development of the PtDA a series of studies was conducted, which are described in this dissertation.
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, because they had never actively considered it, had problems conceptualizing patient participation, or were unaware of having a choice. Furthermore, we found that patients’ preferred level of involvement varied between and within individuals – depending on the type of decision and the severity of their complaints.
These studies also revealed that SDM is frequently perceived in rheumatology outpatient care. Yet, there is room for improvement. A considerable group of patients (54%) would have liked more participation than they had experienced. Especially newly diagnosed patients who faced the decision to initiate disease-modifying anti-rheumatic drugs (DMARD) desired more participation in decision-making. DMARDs are used to control the disease and to relieve or reverse rheumatic symptoms. Perceived barriers for patient participation could be divided into three factors: doctor-related (e.g. a paternalistic attitude), patient-related (e.g. lack of awareness of having a choice and lack of medical knowledge) and context-related (e.g. too little time to decide).
In summary, these two studies showed that patients with inflammatory arthritis often want to participate but are frequently unable to do so to the extend they desire. In order to participate and overcome the barriers they experience, patients need knowledge, skills and personal power. Regarding the knowledge, they need knowledge about the disease and symptoms, treatment options and possible outcomes. Besides this, they need knowledge about SDM and the relevance of patient participation in medical decision-making. Required skills are related to health literacy (e.g. searching and reviewing medical information) and decision-making (e.g. eliciting one’s own needs and preferences, communicating worries and questions, and deliberating options). Finally, they need power to believe in their capacity to influence the treatment decision-making (i.e. self-efficacy). This includes factors such as: believing that they have permission to participate and ask questions, having confidence in the value of their own knowledge and ability to acquire medical knowledge, and self-efficacy to use decision-making skills. To support patients in decision-making about DMARDs on all these three levels (knowledge, skills and power), we chose to develop a PtDA that aims to support inflammatory arthritis patients in their choice between DMARDs.
Although PtDAs are increasingly being developed and their evaluations have shown great potential, widespread adoption has not yet occurred. The reasons behind this are still unclear. Existing PtDAs may not adequately match the needs and wishes of end users (healthcare providers and patients). In order to ease implementation, a systematic and iterative development process involving end users at different times is essential. In this project we have used the IPDAS development model - a new stepwise process model emphasizing the importance of involving health professionals and patients in the development and evaluation of PtDAs. Although this model provides an overview of the entire development process, it does not provide methods for how health professionals and patients can best be involved. Therefore, we complemented this process model with user-centered design (UCD) methods.
Qualitative in-depth interviews combined with rapid prototyping were conducted with patients to assess their needs for specific functionality, content and design of the PtDA. Group meetings with health professionals were organized to assess patients’ needs and to determine how the PtDA should be integrated into individual patient pathways. The current literature was reviewed to determine the clinical evidence to include in the PtDA. To evaluate usability among patients, they were observed using the PtDA while thinking aloud and then interviewed. A web-based PtDA was constructed consisting of four parts: 1) general information about SDM, inflammatory arthritis and DMARDs; 2) an application to compare particular DMARDs; 3) value clarification exercises; and 4) a printed summary of patients’ notes, preferences, worries and questions that they could bring to discuss with their rheumatologist. This study demonstrated that user-centred design methods can be of great value for the development of PtDAs. The early, iterative involvement of patients and health professionals was helpful in developing a novel user-friendly PtDA that allowed patients to choose between DMARDs. The PtDA fits the values of all stakeholders and easily integrates with the patient pathway and daily workflow of health professionals.
During the final phase of this project we evaluated if and in what way patients benefit from the PtDA and if it influences their participation in medical decision-making. A post-test only study with a historical comparison group was conducted. In a two-year period, all patients diagnosed with inflammatory arthritis who were facing the decision to start a (different) DMARD were invited to participate. In the first year, patients received standard information (comparison group). In the second year, patients were referred to the PtDA (intervention group). Patients who agreed to participate (232 patients in the first year; 200 patients in the second year) were sent a questionnaire and an informed consent form by mail, four weeks after consulting their rheumatologist.
The results showed that 57% of respondents from the intervention group had used the PtDA. Younger and higher educated patients have used the PtDA more often. Patients that used the PtDA highly appreciated it and perceived it as easy to use and helpful in the decision-making process. 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. Other outcomes showed no significant difference between the two groups. From this study we can conclude that this PtDA can be a valuable aid in improving patient participation in medical decision-making about DMARDs.
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 IPDAS development process model can be combined with user-centred design methods, and this combination of methods was helpful in developing a user-friendly novel application and creating support for the adoption of the PtDA. By using these methods, the PtDA was able to fit the values of all the stakeholders and easily integrate into the patient pathway and daily workflow of the health professionals. Currently, our PtDA is still being successfully used and has been updated after completion of the project, a clear indication of the substantive value of our developed PtDA and developmental approach.
