Patient perception, preference and participation“I suddenly felt I’d aged”: A qualitative study of patient experiences of polymyalgia rheumatica (PMR)
Introduction
Polymyalgia rheumatica (PMR) is the most common inflammatory rheumatic condition in people aged over 50 with an incidence of 1 in 1000 in this age group and a lifetime risk of 2.4% for women and 1.7% for men [1], [2]. It is characterised by pain and stiffness in the hips and shoulders, raised inflammatory markers and response to glucocorticosteroids, although atypical presentations can occur in up to 20% of those affected [3], [4]. PMR has a major impact on quality of life [5] and treatment with corticosteroids is associated with a high rate of adverse effects [6]. Despite this, it remains an under-researched and poorly understood condition with the lack of primary care research particularly notable considering that the majority of PMR is diagnosed and managed in primary care [7].
Patients with PMR require frequent, comprehensive clinical assessments. At each consultation assessment of disease activity and response to treatment is needed, as well as evaluation of treatment side effects and assessment for complications [8]. Exploring and understanding the patient experience of PMR as an ‘illness’ is crucial in order to facilitate shared decisions about treatment, balancing symptom control and functional enablement against adverse effects of steroid therapy. Much of the research into PMR to date however focuses on a biomedical model of ‘the disease’ and current clinical assessment therefore tends to be set in this paradigm.
There is increasing emphasis in many areas of health care on patient reported outcome measures (PROMS) as one tool to help in the drive to achieve the goal of person-centred care. Only by exploring patient experiences can the outcomes which are meaningful to patients be identified. For example, in rheumatoid arthritis, an appreciation of the significance of fatigue was first identified through qualitative exploration [9], [10] and it is now recommended that fatigue is measured in addition to the core outcome set in all clinical trials of the condition [11].
There is work being done towards agreeing a core set of outcome measures for use in clinical trials of PMR [12]. However, there are no measures available which assess outcomes directly from the perspective of a patient with the condition. A PROM developed specifically for PMR would contribute greatly to a comprehensive assessment of the condition. The first step in developing a PROM is to determine the conceptual framework through qualitative studies of the target population [13].
We therefore set out to explore patient experiences of living with, and receiving treatment for, PMR with the dual aims of enhancing understanding of the condition from the patient perspective and allowing derivation of a conceptual framework for future development of a PROM.
Section snippets
Methods
Ethical approval for this study was obtained from the Dyfed Powys Research Ethics Committee (REC 12/WA/0344, 15/11/12).
Participants were recruited from 10 general practices from South Yorkshire. A purposive sampling strategy was used to recruit practices which were diverse according to their Index of Multiple Deprivation score, list size and training status.
Patients aged 50 years and over with a Read coded PMR diagnosis and classical PMR symptoms (documented in the electronic medical record as
Results
5 Key themes were identified which were all interlinked and related. A conceptual framework was developed which reflected the relationship between the themes and subthemes (see Appendix A).
Discussion
This is the first qualitative study to explore the effect of PMR on patients’ lives. Studies of other chronic rheumatological conditions have contributed to a wealth of models describing the effects of long term conditions on patients and their families e.g. Bury's ‘Chronic illness as biographical disruption’ [16] and Weiner's ‘Strategies for tolerating uncertainty’ [17], and many of the themes identified in this study correlate well with these existing models. Eisenberg's concept of the
Funding sources
Dr Helen Twohig is funded by an NIHR In-Practice Fellowship and the study received funding from the RCGP Scientific Foundation Board (SFB-2012-04). Professor Christian Mallen is funded by an Arthritis Research UK Clinician Scientist Award (19634).
Declarations
None of the authors have any competing interests.
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The patient's perspective of the adverse effects of glucocorticoid use: A systematic review of quantitative and qualitative studies. From an OMERACT working group
2020, Seminars in Arthritis and RheumatismCitation Excerpt :The qualitative studies had far fewer participants (10-50), as would be expected for this method of research. The included studies were predominantly carried out in the United States of America (9 studies) [8,19–26] and the United Kingdom (8 studies) [18,19,27–32], however, other countries were also represented including France [33,34], Canada [19,35], New Zealand [36], Australia [22], the Netherlands [7], Germany [37] and Morocco [38]. Although the majority of the studies looked at patients with inflammatory rheumatic conditions, non-rheumatic inflammatory conditions were also represented, including immune thrombocytopenic purpura [21,24,26,28,30,37].
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2019, Rheumatic Disease Clinics of North AmericaCitation Excerpt :Patients’ perspectives sometimes may differ from the physician’s conceptual model of PMR. For example, weakness is a crucial issue in PMR, although it is not usually considered to be a clinical outcome in studies.42 To patients, perceived disability represents the most distressing disease-related burden, even more than pain.42