Patients experiences of Polymyalgia Rheumatica: a Qualitative Literature Synthesis Review

Abstract

Background Qualitative research is needed to better understand the concepts of remission and relapse in Polymyalgia Rheumatica (PMR). Remission, relapse, and disease activity have been defined heterogeneously in clinical studies which exclude the patient view leading to a discrepancy between physician and patient perspectives when evaluating disease activity. Aims The present work is part of a project of the PMR Working Group of Outcome Measures in Rheumatology (OMERACT), which is a global, volunteer-driven, non-profit research group aiming to improve outcome measures in rheumatic diseases. We carried out a synthesis of findings from multiple qualitative studies to provide a range and depth of meanings, experiences, and perspectives of participants across health-care contexts to explore the patient perspectives of disease activity in PMR. Methods A professional librarian carried out systematic search of the qualitative research literature across Ovid (Medline), EMBASE and CINAHL to identify studies of interest. Research synthesis was carried out in accordance with the ENTERQ criteria by three researchers with qualitative research experience. Results The search was carried out from each of the database point of inception to 19/10/2023. Review of abstracts, and hand searching reference lists of manuscripts identified 12 studies of interest. There were three main over-arching ideas identified within the published work: 1. Pathway to diagnosis, 2. Managing uncertainty and 3. Challenges to everyday life. Within these three over-arching ideas there were sub-themes identified within the conceptual scaffold which were underpinned with the expression of self and control. The domain of pathway diagnosis included making sense of the condition, normalisation of symptoms and struggles navigating care systems. Within the domain of manging uncertainty where the concepts of self and illness and the positive and negative effects of steroids. The Challenges to everyday life domain comprised day to day living, adaptation and psycho-social burden of disease. Conclusion This research synthesis of qualitative work on PMR has identified three over-arching domains providing a rich narrative of lived experience which point to why discrepancies exist within current physician-focused definitions of remission and relapse. Disclosure Nonspecific to this study