Glucocorticoids (GC) are the mainstay of treatment for giant cell arteritis (GCA), but long-term use can cause significant adverse events. Rheumatologists from European Union-5 (EU-5) countries (France, Germany, Italy, Spain, and the United Kingdom) and the United States who manage patients with GCA were invited to participate in a cross-sectional retrospective survey (Adelphi Real-World GCA Disease Specific Programmes) between May and October 2024. Rheumatologists completed the surveys based on their experiences managing patients with GCA, including patients' demographic and clinical characteristics, treatment histories, and rates of GC-related adverse events; rheumatologists also shared their opinions on advanced therapies and management strategies. Patients for whom their rheumatologists provided information were invited to self-report their treatment experiences and preferences. In total, 196 rheumatologists reported on 846 patient cases, of whom 221 (26.1%) patients self-reported their experiences. Among all 846 patients, 63% were female, with a mean age of 71 years and a median of 15.2 months since GCA diagnosis; ≥ 99% received GCs within the last 12 months. For patients diagnosed with GCA < 12, 12-24, and > 24 months ago, median cumulative GC doses over the last 12 months were 4343, 5200, and 2196 mg, respectively. Despite most rheumatologists intending to stop GCs by 24 months, 80% of patients were receiving an average of 8.4 mg/day at 24- < 36 months, with 75% receiving 5.3 mg/day at ≥ 48 months. Most rheumatologists (≥ 90%) agreed that advanced therapies should be given early in GCA treatment, yet only 48% reported prescribing an advanced therapy at any point after diagnosis. Both patients and rheumatologists reported GC-related adverse events, most commonly weight gain, fatigue, and fluid retention. Despite aiming to taper patients off GCs by 24 months, most patients remained on GCs for ≥ 48 months. Reports of GC-related adverse events highlight the need for early and effective steroid-sparing intervention with advanced therapies.
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