Background Polymyalgia rheumatica (PMR) is a common inflammatory disorder of older (>50 years) adults, frequently managed in primary care. PMR remains under-researched despite the significant impact this condition has on patient's quality of life. Existing research is typically focused in secondary care settings and as such may not be generalizable to the wider PMR patient population. The importance of involving patients in research is increasing recognised as best practice, yet to date patient priorities for PMR research have not been examined.
Objectives To identify patient priorities for PMR research.
Methods All adults aged ≥50years registered with 150 English general practices who had a first Read code for PMR in their medical records in the preceding 3 years were mailed a self-completion questionnaire (n=704). Survey items included questions on patient demographics and PMR symptoms. Questions regarding patient priorities for PMR research were developed in collaboration with patient members of the leading UK patient group (PMRGCAuk). Patients were asked to indicate what their priorities for research were from a predefined list of 8 items and an additional free-text option.
Results 550 patients responded (78%). The mean (SD) age was 74.2 (8.4) years and 365 (66%) were female. Non-responders did not differ significantly from responders in terms of age (mean age 75 (9.2) vs 74.2 (SD 8.4), p=0.21) or gender (73% vs 66% females, p=0.14).Priorities areas for research were focused on how to manage pain, stiffness and fatigue (440, 80%), improving the diagnosis of PMR (391, 71%), steroid management (341, 62%) and improving self-management (330, 55%). The development of giant cell arteritis (74, 13%), a key concern for clinicians, was the item rated as least important by participants for future research.
Conclusions Meaningful involvement of patients in the research process is essential if we are to generate evidence that improves outcomes for those suffering with this painful and disabling condition. This survey of PMR patients in primary care suggests that symptom management and managing medication are key areas for patients for future research. Researchers and funding organisations should be aware of these priorities if we to generate research findings that are relevant to the widest range of stakeholders.
Acknowledgement This abstract presents independent research funded by the National Institute for Health Research (NIHR). The views expressed are those of the author(s) and not necessarily those of the NHS, the NIHR or the Department of Health.
Disclosure of Interest None declared