Patient perceptions of glucocorticoids in anti-neutrophil cytoplasmic antibody-associated vasculitis

Abstract

Granulomatosis with polyangiitis (GPA), microscopic polyangiitis (MPA), and eosinophilic granulomatosis with polyangiitis (EGPA) are multisystem diseases of small blood vessels, collectively known as the anti-neutrophil cytoplasmic antibody (ANCA)-associated vasculitides (AAV). This study explores the patient’s perspective on the use of glucocorticoids, which are still a mainstay of treatment in AAV. Patients with AAV from the UK, USA, and Canada were interviewed, using purposive sampling to include a range of disease manifestations and demographics. The project steering committee, including patient partners, designed the interview prompts and cues about AAV, its treatment, and impact on health-related quality of life. Interviews were transcribed and analysed to establish themes grounded in the data. A treatment-related code was used to focus analysis of salient themes related to glucocorticoid therapy. Fifty interviews were conducted. Individual themes related to therapy with glucocorticoids emerged from the data and were analysed. Three overarching themes emerged: (1) Glucocorticoids are effective at the time of diagnosis and during relapse, and withdrawal can potentiate a flare, (2) glucocorticoids are associated with salient emotional, physical, and social effects (depression, anxiety, irritation, weight gain and change in appearance, diabetes mellitus, effect on family and work); and (3) patient perceptions of balancing the risks and benefits of glucocorticoids. Patients identified the positive aspects of treatment with glucocorticoids; they are fast-acting and effective, but, they voiced concerns about adverse effects and the uncertainty of the dose-reduction process. These results may be informative in the development of novel glucocorticoid-sparing regimens.

ANCA-associated vasculitis

“…Several factors may explain this situation. First, high-dose glucocorticoids remain integral to standard care but they have multiple toxic effects, including on QOL domains such as mental health 223 , which should be assessed using, for…”

Is there a safe and effective way to wean patients off long-term glucocorticoids

“…Anecdotally many patients starting glucocorticoid treatment express fears of weight gain, skin changes and 'becoming addicted' with one patient being particularly concerned because a relative had died from glucocorticoid-related adverse effects. These anecdotes are born out by studies of patient perceptions of glucocorticoid therapy, which found that patients voiced concerns about adverse effects [26] and, given a 'risk-free choice', preferred withdrawal of glucocorticoids over other agents [27]. It is essential that the benefits and risks of treatments and patient concerns are fully discussed before starting treatment and that the decision to undertake glucocorticoid treatment is made jointly by patient and practitioner.…”

How Do Glucocorticoids Used in Rheumatic Disease Affect Body Weight? A Narrative Review of the Evidence

“…Similarly, in a survey of patients with adrenal insufficiency from 5 European countries, over 50% of respondents reported significant concerns about weight gain . A qualitative study of patients with antineutrophil cytoplasmic antibody–associated vasculitides from the UK, Canada, and the US who used GCs also found that weight gain and change in appearance were widely described as salient side effects across all countries .…”