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

• Published in: Rheumatology international Vol. 38; no. 4; pp. 675 - 682
• Main Authors: Robson, Joanna C., Dawson, Jill, Cronholm, Peter F., Ashdown, Susan, Easley, Ebony, Kellom, Katherine S., Gebhart, Don, Lanier, Georgia, Milman, Nataliya, Peck, Jacqueline, Luqmani, Raashid A., Shea, Judy A., Tomasson, Gunnar, Merkel, Peter A.
• Format: Journal Article
• Language: English
• Published: Berlin/Heidelberg Springer Berlin Heidelberg 01-04-2018; Springer Nature B.V
• Subjects: Aged; Anti-Neutrophil Cytoplasmic Antibody-Associated Vasculitis - diagnosis; Anti-Neutrophil Cytoplasmic Antibody-Associated Vasculitis - drug therapy; Anti-Neutrophil Cytoplasmic Antibody-Associated Vasculitis - psychology; Canada; Disease Progression; Female; Glucocorticoids - adverse effects; Glucocorticoids - therapeutic use; Health Knowledge, Attitudes, Practice; Humans; Inflammatory diseases; Interviews as Topic; Male; Medicine; Medicine & Public Health; Mental Health; Middle Aged; Neutrophils; Patient Opinion; Patient Safety; Patients - psychology; Qualitative Research; Quality of Life; Recurrence; Remission Induction; Rheumatology; Risk Assessment; Treatment Outcome; United Kingdom; United States; Vein & artery diseases; Microscopic polyangiitis; Glucocorticoids; Patient perspectives; Eosinophilic granulomatosis with polyangiitis; ANCA-associated vasculitis; Granulomatosis with polyangiitis (Wegener’s)
• ISSN: 0172-8172; 1437-160X
• DOI: 10.1007/s00296-017-3855-6

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.