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Open Access Rheumatol. 2019 Aug 29;11:189-198. doi: 10.2147/OARRR.S213964. eCollection 2019.

A qualitative study of patient perspectives related to glucocorticoid therapy in polymyalgia rheumatica and giant cell arteritis.

Author information

1
School of Public Health, University of Adelaide, Adelaide, SA 5000, Australia.
2
Adelaide Medical School, University of Adelaide, Adelaide, SA 5000, Australia.
3
Rheumatology Unit, The Queen Elizabeth Hospital, Woodville, SA 5011, Australia.
4
Rheumatology Unit, The Royal Adelaide Hospital, Adelaide, SA 5000, Australia.

Abstract

Objective:

To determine patient experiences of glucocorticoid (GC) therapy in polymyalgia rheumatica (PMR) and giant cell arteritis (GCA).

Methods:

Patients with a diagnosis of PMR or GCA were invited to participate in this qualitative study that used focus groups to explore: symptoms onset, process of diagnosis, treatment, adverse effects (AEs), and ongoing condition/s management. Data were transcribed verbatim and a "framework" approach was used for analysis and interpretation.

Results:

Fourteen patients participated. Weight gain, changes in face and neck shape, and bruising were commonly reported and impacts of these AEs on quality of life were highlighted. Dealing with uncertainties associated with long-term experiences of the condition/s and cycles of GC treatment were raised as were workload demands for patients in managing both the condition and other people's expectations and recommendations related to GC therapy.

Conclusion:

These findings demonstrate that the patient experience of GC use is poorly captured by usual physician monitoring for GC AEs. These findings suggest that development of a patient-reported outcome instrument for inflammatory conditions treated with GCs is required.

KEYWORDS:

adverse effects; giant cell arteritis; glucocorticoid therapy; patient experience; polymyalgia rheumatica

Conflict of interest statement

Through the data collection and analysis period of this study, Elizabeth Hoon was supported by an Arthritis South Australian Florey Research Fellowship.  Tiffany K Gill reports grants from Arthritis Australia, during the conduct of the study. The authors report no other conflicts of interest in this work.

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