Arthritis patients’ motives for (not) wanting to be involved in medical decision-making and the factors that hinder or promote patient involvement

Abstract

The aim of this study is to gain insight into arthritis patients' motives for (not) wanting to be involved in medical decision-making (MDM) and the factors that hinder or promote patient involvement. In-depth semi-structured interviews were conducted with 29 patients suffering from Rheumatoid Arthritis (RA). Many patients perceived the questions about involvement in MDM as difficult, mostly because they were unaware of having a choice. Shared decision-making (SDM) was generally preferred, but the preferred level of involvement varied between and within individuals. Preference regarding involvement may vary according to the type of treatment and the severity of the complaints. A considerable group of respondents would have liked more participation than they had experienced in the past. Perceived barriers could be divided into doctor-related (e.g. a paternalistic attitude), patient-related (e.g. lack of knowledge) and context-related (e.g. too little time to decide) factors. This study demonstrates the complexity of predicting patients' preferences regarding involvement in MDM: most RA patients prefer SDM, but their preference may vary according to the situation they are in and the extent to which they experience barriers in getting more involved. Unawareness of having a choice is still a major barrier for patient participation. The attending physician seems to have an important role as facilitator in enhancing patient participation by raising awareness and offering options, but implementing SDM is a shared responsibility; all parties need to be involved and educated.

Shared decision-making in rheumatology : what matters to patients?

“…Although patients have the right to be informed about all treatment options (13) and one of the quality domains of the IPDAS is to provide all options to patients (51, 52), we had a valuable discussion with the health professionals about whether to give patients access to all available medication options. Our previous studies (160,161) showed that patients not only worry about the side effects and potential risks of their current or proposed treatment, but also had significant worries about the risks of future treatments and about 'running out of options,' should the proposed medication fail to work. To decrease this uncertainty, patients expressed a need to have an overview of all available options, for the time being as well as for the future.…”

“…Because our previous studies showed a need for patient participation and information about multiple specifi c DMARDs (128,160), the steering group decided to develop a PtDA for patients diagnosed with Rheumatoid Arthritis (RA), Ankylosing Spondylitis (AS) or Psoriatic Arthritis (PsA) who face the decision to initiate (a diff erent) DMARD.…”

“…Based on previous work (160,161), the tool was designed to enable patients to compare multiple DMARDs with regard to both clinical information as well as practical information with possible consequences for daily life. Furthermore, it aims to support patients in determining treatment preferences, worries and questions and to help patients to express these feelings and questions to the health professionals.…”

“…In fact, previous research has shown that patients with a rheumatic disease are often less informed and less involved in decisionmaking than they would prefer (22, 26, 62-65, 128, 160). SDM barriers reported by patients include being unaware of having a choice, lack of medical knowledge and a power imbalance in the doctor-patient relationship (39,160).…”

“…Patients often find it hard to recognise that a decision needs to be made and difficult to actively participate in the process to come to an informed values-based decision (39,160). Physicians, on the other hand, may be uncomfortable with patient-involvement due to a lack of time, self-efficacy or skills (31).…”