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

Abstract

ObjectivesClinical 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.MethodsUK patients with GCA participated in semi-structured telephone interviews. Inductive thematic analysis was employed.Results24 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.ConclusionsThe 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.

Characteristics of patients with giant cell arteritis who experience visual symptoms

“…Our study showed that GCA patients with current visual symptoms experienced significantly more anxiety and poorer general physical and mental health at baseline, assessed by SF-12 summary scores. Though a qualitative study performed in the UK also found that anxiety about future visual loss was an important concern of GCA patients [23], this is in contrast to other studies. Jobard et al and Kupersmith et al found that GCA visual complications did not have any major impact on health-related quality of life (QoL), as assessed using the SF-36 score [24,25].…”

A Multicentre, Randomised, Double-Blind, Placebo-Controlled, Parallel-Group Study to Evaluate the Efficacy and Safety of Sirukumab in the Treatment of Giant Cell Arteritis

“…Giant cell arteritis (GCA) is the most common form of primary systemic vasculitis and predominantly affects people aged C 50 years, with higher prevalence in women than men [1][2][3][4]. Symptoms include headache, jaw claudication, vision impairment, scalp tenderness, and constitutional and polymyalgia rheumatica-related symptoms (e.g., proximal limb girdle stiffness) [5].…”

“…The recommended initial GCA treatment is high-dose glucocorticoids [3,4,8], tapered gradually over at least 12-18 months [9,10]. Unfortunately, disease flare requiring adjustment of glucocorticoid dose occurs in 45-80% of patients [11][12][13][14], leading to prolonged glucocorticoid tapers and high glucocorticoid cumulative exposure and toxicity [15][16][17].…”

<p>Systemic vasculitis and patient-reported outcomes: how the assessment of patient preferences and perspectives could improve outcomes</p>

“…The impact of symptoms and side effects of treatment in systemic vasculitis can affect all aspects of health-related quality of life (HRQoL) 8,10,11. Systemic vasculitis affects people of working age12 and those planning a family13,14 or active retirement 15. Patients also face the situation of having a rare autoimmune rheumatic disease,16 which can be isolating, resulting in delays to get a diagnosis and treatment, and difficulties in navigating health care systems between different specialists 16.…”

“…A novel biologic medication, the interleukin-6-receptor inhibitor tocilizumab, appears to improve HRQoL at 1 year in patients with GCA;60 this finding should be examined further but may be associated with the drug’s glucocorticoid-sparing effect. The impact of GCA on patients’ lives is due to a combination of symptoms (eg, visual disturbance, musculoskeletal symptoms and pain), adverse effects of glucocorticoids, and the disruption to normal life 15. Patients fear blindness, have concerns about delay in diagnosis,15 and rank losing sight in both eyes permanently’, “having intense or severe pain” and “feeling weak, tired or exhausted” as key domains of HRQoL 11.…”