Patient experiences of PMR: a qualitative narrative literature review
Max Yates1,2, Janice Mooney3, Pratyasha Saha1,2
1Norwich Medical School, University of East Anglia, Norwich, UK.
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.
Insights
Patient experiences with polymyalgia rheumatica (PMR) are often overlooked and differ from clinical views. Understanding patient perspectives on disease management, especially concerning glucocorticoid treatment and the terms relapse and remission, is crucial for improved care.
Area of Science:
- Rheumatology
- Qualitative Research
- Patient-Reported Outcomes
Background:
- Polymyalgia rheumatica (PMR) is a common inflammatory condition causing shoulder and hip pain/stiffness.
- Patient experiences with PMR are underexplored and often contrast with clinician perspectives.
- Existing research lacks depth on patient views of 'relapse' and 'remission' in PMR.
Purpose of the Study:
- To explore patient experiences and views on managing polymyalgia rheumatica (PMR).
- To investigate patient perspectives on key clinical concepts like 'relapse' and 'remission' in PMR.
- To identify gaps between clinical definitions and patient experiences in PMR.
Main Methods:
- A comprehensive literature search was conducted across four electronic databases.
- Qualitative studies reporting patient experiences in PMR were identified and selected.
- Thematic synthesis was employed to integrate findings from five included studies.
Main Results:
- Three overarching themes emerged: pathway to diagnosis, managing uncertainty, and challenges to daily life.
- Patients reported delays in diagnosis and complex responses to glucocorticoids ('double-edged sword').
- Patient descriptions of 'relapse' and 'remission' often diverged from clinical definitions.
Conclusions:
- PMR management presents unique challenges, particularly with long-term glucocorticoid use.
- There is a significant gap between clinical terminology and patient experiences in PMR.
- Findings underscore the need for more patient-centered approaches in PMR care and support.
More Related Videos
Related Concept Videos
03:46Qualitative Analysis
For instance, group IV...
01:10Qualitative Analysis
There are two main approaches to qualitative analysis:...
01:10Review and Preview
Percentiles are a type of fractile that partition data into...
01:13Review and Preview
01:12What is an Experiment?
01:19Thomson's e/m Experiment
A particle with charge q, speed v, and mass m enters an area from the top, where the magnetic and electric fields are perpendicular both to the particle's motion and to one another. The magnetic...