Polymyalgia rheumatica (PMR) is a common inflammatory disorder that is usually managed with oral glucocorticoids, which although effective can cause significant adverse events. Support group survey data suggests length of glucocorticoid treatment and managing side effects are key priority areas of management for patients. Recognising that not all patients will access patient support organisations, our objective was to identify priorities for PMR management and research among primary care PMR patients.
All adults aged ≥ 50 years 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 regarding patient priorities for PMR management (from a pre-defined list of 10 items) and suggestions for future research (8 items, plus a free-text option), which were developed in collaboration with PMRGCAuk.
Five hundred fifty patients responded (78%). The mean (SD) age was 74.1 (8.5) years and 361 (66%) were female. Priority research areas were focused on how to better manage pain, stiffness and fatigue (431, 78%), improving the diagnosis of PMR (393, 71%) and steroid management (342, 62%).
This survey of PMR patients suggests that symptom management, early diagnosis and managing medication are key areas for patients for future research. Researchers and funding organisations should be aware of these priorities if we are to generate research findings that are relevant to the widest range of stakeholders.