Research priorities for medically not yet explained symptoms expressed by patients, carers, and healthcare professionals in the Netherlands following the James Lind Alliance Priority Setting Partnership approach

Objective: Experiencing physical symptoms that are medically not yet explained (MNYES) is associated with considerable burden in daily life. Research priorities in this area have been primarily investigator-driven. The present study identifies the top 10 research priorities, incorporating the views of patients, carers and healthcare professionals.

Methods: This study used the Priority Setting Partnership approach in collaboration with the James Lind Alliance (JLA). The priority setting approach combines survey-based data from patients with a specific disorder/condition and relevant stakeholders (i.e., caregivers and healthcare professionals) with input from group meetings and a final priority setting consensus meeting. There were three consecutive phases: (1) online survey with an open-ended question to collect topics for future scientific research (N = 345 participants); (2) an online survey among stakeholders to prioritise the research questions generated in Phase 1 (N = 400); and (3) a final multi-stakeholder consensus meeting, held over two half-days to determine the final top 10 research priorities for the Netherlands (day 1 N = 25, day 2 N = 24).

Results: Phase 1 resulted in 572 topics, which were reduced to 37 summary research questions. Phase 2 resulted in 18 research priorities, that were ranked and the top 10 priorities were established during the final consensus meeting. The top 10 research priorities included three main themes: optimising efficient diagnosis and treatment, aetiology and prevention, and coping with MNYES.

Conclusion: The top 10 priorities provide insight into what is most important for future research into MNYES from the perspective of patients, carers and healthcare professionals.