Background/Purpose: Granulomatosis with polyangiitis
(GPA), microscopic polyangiitis (MPA) and
eosinophilic granulomatosis with polyangiitis (EGPA)
comprise a group of multisystem diseases of the small blood vessels known as antineutrophil cytoplasm antibody (ANCA)-associated
vasculitis (AAV). Inflammation can occur throughout the body and patients demonstrate
significant impairments in mental and physical health. Treatment with glucocorticoids,
often in high doses and in combination with other immunosuppressive therapy, is
the cornerstone of management. However, glucocorticoids have substantial
physical and psychological adverse effects.

Methods: Patients with AAV from the UK, USA, and Canada were
interviewed about their disease and treatment. Patients were purposively
sampled to include the spectrum of diseases, chronicity of disease (diagnosis
or flare < 2 years previously or > 2 years), age, sex, and organ
involvement. The project steering committee, which included patient-partners, defined
a set of neutral, nondirective interview prompts and cues on the patient
experience of AAV and its treatment, and any impact on health-related quality
of life. Interviews were recorded and transcribed verbatim, anonymised and
systematically analysed to establish themes grounded in the data. As themes
emerged, a collaborative code book was developed. The final transcript yielded
no new codes, indicating data saturation. Earlier transcripts were checked for
the emerging new codes. A treatment-related code was used to identify all ideas
related to experience of treatment; sub codes within the treatment code related
to glucocorticoids were defined, grouped into categories, and then grouped into
overarching themes.

Results: Forty-nine interviews were conducted. Individual sub
codes related to glucocorticoid therapy were identified and grouped into 3 themes:
i) Glucocorticoids are effective at the time of diagnosis
and during relapse; withdrawal can potentiate a flare, ii) Glucocorticoids are
associated with salient emotional, physical and social effects (depression,
anxiety, irritation, weight gain and change in appearance, diabetes mellitus);
and iii) Balancing the pros and cons of glucocorticoids (symptom relief versus
long-term effects). The interaction between these themes is described in Figure
1.

Conclusion: Patients are generally positive about
treatment with glucocorticoids in terms of rapidity of onset and efficacy, but
anxious about potential long-term adverse effects and the uncertainty of the
weaning process. Psychological effects predominated among adverse effects
experienced. The results of this study will inform the development of a disease-specific
PRO for AAV and a deeper understanding of the risks and benefits of this
extremely common form of treatment.

Figure 1. Patient
experiences of therapy with glucocorticoids (GC)