What is the impact of giant cell arteritis on patients' lives? A UK qualitative study
Jennifer Liddle1,2, Roisin Bartlam1, Christian D Mallen1
1Research Institute for Primary Care and Health Sciences, Keele University, Keele, UK.
Insights
Giant cell arteritis (GCA) significantly impacts patients' lives through ongoing symptoms and life-changing effects from the disease and its treatments. Understanding these burdens helps tailor patient care and set realistic goals.
Area of Science:
- Rheumatology
- Vasculitis Research
- Patient-Reported Outcomes
Background:
- Giant cell arteritis (GCA) management requires balancing disease and treatment risks.
- Limited research exists on the specific burdens patients experience due to GCA and its management.
- Understanding patient impact is crucial for effective clinical care.
Purpose of the Study:
- To explore the multifaceted impact of giant cell arteritis (GCA) on patients' daily lives.
- To investigate the burdens associated with both the disease and its treatment.
- To identify key factors influencing patients' quality of life during GCA management.
Main Methods:
- Conducted semi-structured telephone interviews with UK patients diagnosed with GCA.
- Employed inductive thematic analysis to interpret qualitative data from patient interviews.
- Recruited 24 participants aged 65-92, with varying durations of GCA diagnosis.
Main Results:
- Identified overarching themes of ongoing disease/treatment symptoms and 'life-changing' impacts.
- GCA's impact stems from a dynamic interplay of symptoms, side effects, daily life adaptations, and loss of normality.
- Glucocorticoid treatment burdens and fear of vision loss were significant contributors to diminished normality.
Conclusions:
- The impact of GCA is substantial, multifaceted, and persistent, even with controlled disease activity.
- Findings underscore the need for clinicians to better comprehend patient priorities and experiences.
- This research supports setting realistic treatment goals and planning life adaptations collaboratively with patients.
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.
