Practice variation and interdisciplinary care gaps in idiopathic intracranial hypertension

INTRODUCTION: Idiopathic intracranial hypertension (IIH) is a rare disorder requiring coordinated interdisciplinary management. The Austrian Network for IIH (AN4IH) has developed consensus-based recommendations to standardize its diagnosis, treatment, and monitoring; however, their uptake in clinical practice remains unassessed. METHODS: Between October 2025 and January 2026, all 1460 members of the Austrian Neurological Society (ÖGN) were invited to complete an anonymized online survey on diagnostic and therapeutic practices and AN4IH recommendation awareness, with a response rate of 3.7%. Associations between categorical variables were assessed using Fisher's exact test. RESULTS: Of the 54 respondents 64.8% worked in a hospital setting. Nearly 80% treated 5 or fewer IIH patients per year. Low confidence in IIH management was reported by 33.3%, with a tendency toward greater confidence in hospital-based physicians (odds ratio, OR 2.55, 95% confidence interval, CI 0.68-9.86) and those treating 6 or more patients annually (OR 2.62, 95% CI 0.46-27.96). Interdisciplinary pathways were lacking in 55.6% of settings. Routine diagnostics included brain magnetic resonance imaging (MRI, 98.1%), neurological examination (94.4%), ophthalmological assessment (85.2%), and lumbar puncture (77.8%). Venous MR angiography (53.7%), perimetry (46.3%), optical coherence tomography (31.5%), and optic nerve sonography (14.8%) were used less consistently. Acetazolamide (98.1%) and weight reduction (90.7%) were the dominant treatment strategies. The AN4IH recommendations were partially known to 44.5% of respondents. Of those, 95.8% perceived them as a valuable clinical resource. DISCUSSION: Substantial practice variation in IIH management was observed among survey respondents. The AN4IH recommendations are widely perceived as supportive and may help standardize care. Yet implementation requires broader interdisciplinary structures in specialized settings.