Patient perception, preference and participation
“I suddenly felt I’d aged”: A qualitative study of patient experiences of polymyalgia rheumatica (PMR)

https://doi.org/10.1016/j.pec.2014.12.013Get rights and content

Highlights

  • The 5 main themes were: pain, stiffness and weakness, disability, treatment and disease course, experience of care and psychological impact.

  • Some aspects of patients’ experiences challenge conventional understanding of PMR.

  • A conceptual framework was developed from the interlinked themes and subthemes which will be used to develop a patient reported outcome measure for PMR.

Abstract

Objectives

To explore patient experiences of living with, and receiving treatment for, PMR.

Methods

Semi-structured qualitative interviews, with 22 patients with PMR recruited from general practices in South Yorkshire. Thematic analysis using a constant comparative method, ran concurrently with the interviews and was used to derive a conceptual framework.

Results

5 Key themes emerged highlighting the importance of: (1) pain, stiffness and weakness, (2) disability, (3) treatment and disease course, (4) experience of care, (5) psychological impact of PMR. Patients emphasised the profound disability experienced that was often associated with fear and vulnerability, highlighting how this was often not recognised by health care professionals. Patients’ experiences also challenge medical convention, particularly around the concept of ‘weakness’ as a symptom, the use of morning stiffness as a measure of disease activity and the myth of full resolution of symptoms with steroid treatment. Treatment decisions were complex, with patients balancing glucocorticoid side effects against persistent symptoms.

Conclusions

Patients often described their experience of PMR in terms of disability rather than focussing on localised symptoms. The associated psychological impact was significant.

Practice implications

Recognising this is key to achieving shared understanding, reaching the correct diagnosis promptly, and formulating a patient-centred management plan.

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.

References (21)

  • L. Smeeth et al.

    Incidence of diagnosed polymyalgia rheumatica and temporal arteritis in the United Kingdom, 1990–2001

    Ann Rheum Dis

    (2006)
  • C.S. Crowson et al.

    The lifetime risk of adult-onset rheumatoid arthritis and other inflammatory autoimmune rheumatic diseases

    Arthritis Rheum

    (2011)
  • B. Dasgupta et al.

    2012 Provisional classification criteria for polymyalgia rheumatica: a European League against rheumatism/American College of Rheumatology collaborative initiative

    Ann Rheum Dis

    (2012)
  • S.M. Helfgott et al.

    Polymyalgia rheumatica in patients with a normal erythrocyte sedimentation rate

    Arthritis Rheum

    (1996)
  • A. Hutchings et al.

    Clinical outcomes, quality of life, and diagnostic uncertainty in the first year of polymyalgia rheumatica

    Arthritis Rheum

    (2007)
  • S.E. Gabriel et al.

    Adverse outcomes of antiinflammatory therapy among patients with polymyalgia rheumatica

    Arthritis Rheum

    (1997)
  • K. Barraclough et al.

    Polymyalgia rheumatica in primary care: a cohort study of the diagnostic criteria and outcome

    Fam Prac

    (2008)
  • B. Dasgupta et al.

    BSR and BHPR guidelines for the management of polymyalgia rheumatica

    Rheumatology (Oxford)

    (2010)
  • S. Hewlett et al.

    Patients’ perceptions of fatigue in rheumatoid arthritis: overwhelming, uncontrollable, ignored

    Arthritis Care Res

    (2005)
  • M. Ahlmén et al.

    Rheumatology outcomes: the patient's perspective. a multicentre focus group interview study of Swedish rheumatoid arthritis patients

    Rheumatology (Oxford)

    (2005)
There are more references available in the full text version of this article.

Cited by (0)

View full text