Research priorities of patients with neuromuscular disease.

PURPOSE

This paper describes a study in which patients with neuromuscular disease (NMD) were engaged to list top-priorities for scientific research in order to complement the researchers' agenda.

METHOD

A dialogic model for research agenda setting was used. Interviews, focus groups and expert meetings with patients were held to identify research topics. Research topics were prioritized via a questionnaire. Agendas were integrated in a dialogue meeting with professionals and patients.

RESULTS

The research agenda of NMD patients is divided in four research domains, with a total of 24 research topics. These domains include (1) health; (2) quality of life; (3)quality of care and support, and (4) basic issues. Among the research domains highest priority was given to research on health, followed by research on quality of life.

CONCLUSIONS

Both patients and professionals agreed a proper balance needs to be found between fundamental research and research on symptomatic treatment and quality of life. They concluded that more attention is required for research on the effective treatment of symptoms, quality of life and implementation of knowledge about NMD in regular care.