ARE PATIENTS' VIEWS AND CULTURAL BACKGROUND TAKEN INTO CONSIDERATION IN THE DEVELOPMENT OF INSTRUMENTS THAT ASSESS SHARED DECISION MAKING OUTCOMES?: A SYSTEMATIC REVIEW TO INFORM RHEUMATOLOGY PRACTICE AND RESEARCH

Purpose:

Shared decision making (SDM) is an essential component of high quality care in rheumatology. However, many questions remain as to which instruments should be used to evaluate SDM outcomes in rheumatology. We hypothesized that, to ensure the clinical relevance of these instruments, patients’ views and cultural background should inform their development. Therefore, we sought to describe the extent of patient involvement and consideration of cultural diversity in developing and validating instruments that assess SDM outcomes, as well as their applicability to rheumatology practice.

Method:

A systematic review was conducted using the search strategy and methods of a systematic review of SDM instruments published by Scholl and colleagues in 2011, and guided by the process of cross-cultural adaptation of self-report measures by Beaton and colleagues. We updated Scholl’s electronic search on January 20, 2014, using PubMed and the Web of Science databases. Experts in the field of SDM were also consulted to identify relevant instruments.

Result:

A total of 684 publications were screened for relevance by title and abstract, yielding ten that met the eligibility criteria. We identified five instruments, supplementing the nine already derived from Scholl’s review. Of the 14 total instruments, two considered patients’ views of decision making in their development (i.e. the Hip/Knee Osteoarthritis Decision Quality Instrument (HK-DQI) and the COMRADE), and five included patients in their validation process (i.e. the HK-DQI, the Decisional Conflict Scale (DCS), the SURE screening test, the Decision Evaluation Scales, and the perceived behavioral control subscale of the Theory of Planned Behaviour). Two instruments included rheumatology patients in their development or validation (the SURE screening test and the HK-DQI. Two instruments were cross-culturally validated (i.e. the DCS and the perceived behavioral control subscale of the Theory of Planned Behaviour).

Conclusion:

To date, only one instrument has been developed with the input of rheumatology patients and two have been validated among rheumatology patients. None have been tailored to address the cultural diversity of patients with rheumatic diseases. Future studies should make an effort to involve rheumatology patients from diverse backgrounds, and consider their views and culture throughout the development process of SDM instruments.