Patient perspectives on glucocorticoid-associated complications and sequelae in ANCA-associated vasculitis

Glucocorticoids (GC) are not only a cornerstone in the treatment of antineutrophil cytoplasmatic antibodies-associated vasculitis (AAV) but also add to morbidity and mortality. Previously, we investigated GC-related adverse events (GCAE) in AAV using objective, physician-facing tools. The present study focuses on the patients’ perspective of GC treatment. We included patients with a confirmed diagnosis of AAV in this monocentric study. Data were collected by a structured interview and 2 questionnaires regarding therapy strategies to reduce GC exposure and the relevance of individual GC side effects. We compared the findings with the Glucocorticoid Toxicity Index (GTI) 2.0. Of 138 patients recruited, 79.7% reported GCAE moon face, weight gain, and skin alterations being the foremost present. Positive effects were reported by 91.3%, predominantly pain reduction and rapid improvement of general health. In 39.1%, patients reported that positive aspects outweighed the negative ones. General impacts on everyday life were present in 49.3% with more negative than positive impacts (31.2% vs 21.7%, P = .019). Knowledge regarding GC side effects was present in 91.3%. Treatment strategies to reduce GC exposure were generally endorsed by patients. The disease activity had no significant impact on the patients’ perception. Patients reporting more negative GC-related aspects had a significantly higher GTI cumulative worsening score. GC therapy has a significant impact on AAV patients regarding both medical condition and everyday life. We found ambiguous patient opinions regarding GC therapy with a variety of negative and positive aspects. AAV patients strongly support efforts to develop strategies to reduce GC exposure.