Patient experiences of polymyalgia rheumatica: a qualitative narrative literature review

Objectives PMR is a common inflammatory condition characterized by pain and stiffness in the shoulders and hips. Patient experiences of PMR remain underexplored and often diverge significantly from clinician perspectives, contributing to the overall burden of the disease. This review forms part of an ongoing project conducted by the PMR Working Group of Outcome Measures in Rheumatology (OMERACT) with the aim of exploring patient views of ‘relapse’ and ‘remission’. Methods A comprehensive search was conducted across four electronic databases (Ovid MEDLINE, Ovid EMBASE, The Cochrane Library and CINAHL) from database inception to 31/01/2025, to identify qualitative studies reporting patient experience in PMR. Study quality was appraised using the Critical Appraisal Skills Programme qualitative tool, and thematic synthesis used to integrate findings. Results Five studies met inclusion criteria and thematic analysis revealed three overarching themes: (1) the pathway to diagnosis, (2) managing uncertainty and (3) challenges to everyday life. Subthemes provided deeper insights into patient experiences, including delays in help-seeking due to the rationalization of symptoms, and complex responses to glucocorticoid treatment, described by participants as a ‘double-edged sword’, offering rapid improvement in symptoms but also causing significant distress. Notably, commonly used clinical terms such as ‘relapse’ and ‘remission’ were often inconsistent with how patients described their own experiences, underscoring a gap between clinical definitions and patient experiences. Conclusion This qualitative narrative literature review reveals the unique challenges of disease management and the complex realities of long-term glucocorticoid use. These findings highlight the urgent need for more patient-centred approaches to care and support. Key messages Patients often delay seeking care by normalizing symptoms. Glucocorticoids rapidly relieve PMR symptoms but cause distressing side effects and emotional uncertainty for patients. Clinical terms like relapse and remission often misalign with patient experiences, requiring more patient-centred language.