Patient experiences of PMR: 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.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.What does this mean for patients?PMR is an inflammatory condition that causes severe pain and stiffness, especially in the shoulders and hips. It mainly affects older adults and is usually treated with steroid medication, which can relieve symptoms quickly but also cause difficult side effects. This review summarizes what is currently known about how people with PMR experience their condition, based on five published qualitative studies from the UK and Australia. Across the studies, people described long and sometimes frustrating journeys to diagnosis. Many initially thought their symptoms were simply part of ageing, while others were misdiagnosed or felt dismissed by healthcare professionals. Finally receiving a diagnosis often brought relief, but also uncertainty about what PMR would mean for the future. Living with PMR was described as unpredictable, with 'good' and 'bad' days that affected daily tasks such as dressing, cooking and moving around. Steroids were viewed as both essential and challenging: they eased pain quickly, but their side effects-including weight gain, mood changes and sleep problems-were distressing and sometimes long-lasting. Many people struggled emotionally, feeling anxious, frustrated or isolated. Overall, the findings highlight the need for better awareness of the physical and psychological impact of living with PMR, clearer information for patients and more personalized support in managing symptoms and steroid treatment.