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. 2017 Aug 23;7(8):e017073.
doi: 10.1136/bmjopen-2017-017073.

What is the impact of giant cell arteritis on patients' lives? A UK qualitative study

Jennifer Liddle  1   2 , Roisin Bartlam  1 , Christian D Mallen  1 , Sarah L Mackie  3 , James A Prior  1 , Toby Helliwell  1 , Jane C Richardson  1
Affiliations

What is the impact of giant cell arteritis on patients' lives? A UK qualitative study

Jennifer Liddle et al. BMJ Open. .

Abstract

Objectives: Clinical management of giant cell arteritis (GCA) involves balancing the risks and burdens arising from the disease with those arising from treatment, but there is little research on the nature of those burdens. We aimed to explore the impact of giant cell arteritis (GCA) and its treatment on patients' lives.

Methods: UK patients with GCA participated in semi-structured telephone interviews. Inductive thematic analysis was employed.

Results: 24 participants were recruited (age: 65-92 years, time since diagnosis: 2 months to >6 years). The overarching themes from analysis were: ongoing symptoms of the disease and its treatment; and 'life-changing' impacts. The overall impact of GCA on patients' lives arose from a changing combination of symptoms, side effects, adaptations to everyday life and impacts on sense of normality. Important factors contributing to loss of normality were glucocorticoid-related treatment burdens and fear about possible future loss of vision.

Conclusions: The impact of GCA in patients' everyday lives can be substantial, multifaceted and ongoing despite apparent control of disease activity. The findings of this study will help doctors better understand patient priorities, legitimise patients' experiences of GCA and work with patients to set realistic treatment goals and plan adaptations to their everyday lives.

Keywords: Everyday Life; Giant Cell Arteritis; Patient Experience; Qualitative Research; Temporal Arteritis.

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Conflict of interest statement

Competing interests: We have read and understood BMJ policy on declaration of interests and declare the following interests: CDM and RB had support from the National Institute for Health Research School for Primary Care Research (NIHR SPCR) for the submitted work. SLM received an honorarium for serving on a Medical Advisory Board for Chugai Roche Pharmaceuticals. All the authors have no other financial relationships with any organisation that might have an interest in the submitted work in the previous 3 years; no other relationships or activities that could appear to have influenced the submitted work.

Figures

Figure 1
Figure 1
This diagram represents the multiple physical and psychological symptoms experienced by patients living with a diagnosis of giant cell arteritis (GCA) (inner circle), and the multiple domains of daily living (outer circle) that these symptoms can impact on. The arrows denote the rotation of each circle, with the intention of visually representing the ability of individual/groups of symptoms to impact on multiple domains of daily living. The rotation also indicates the potential for the relative importance and impact of each factor to vary over time due to fluctuations in the underlying disease, the dose and duration of glucocorticoid treatment, the influence of comorbidities and changes in individual adaptations and approaches to self-management.
See this image and copyright information in PMC

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