Article

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.

Langue : ANGLAIS