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

Objectives: 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. Methods: 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. Results: 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%, Conclusions: 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.