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ORIGINAL RESEARCH article

Front. Neurol.

Sec. Neuro-Ophthalmology

Visual Prognosis in Idiopathic Intracranial Hypertension: Observations from a Retrospective Cohort in Germany

Provisionally accepted
  • Charité – Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin, and Humboldt-Universität zu Berlin, Berlin, Germany

The final, formatted version of the article will be published soon.

Background: Idiopathic intracranial hypertension (IIH) is a rare disorder of raised intracranial pressure that can cause visual loss. While risk factors for visual outcome have been explored in international cohorts, no data are available from Germany. This study is the first to evaluate clinical characteristics and predictors of visual deterioration in a large German cohort of IIH patients. Methods: We retrospectively analyzed patients diagnosed with IIH between 2004 and 2020 at a tertiary neurological center. Clinical features, ophthalmologic findings, and treatment strategies were recorded. Visual outcomes were assessed at minimum follow-up of 6 months after IIH diagnosis. Poor visual outcome was defined by worsening of visual function or persistent visual impairment. Regression analysis was utilized to evaluate potential risk-factors of poor visual outcome. Results: The cohort included 191 consecutive IIH patients; follow-up ophthalmologic data were available in 90. Poor visual outcome occurred in 30%. Multivariable regression showed male sex (OR 8.7, p = 0.009) and severe papilledema at baseline (OR 7.7, p = 0.02) were independently associated with poor outcome. Age, disease duration, BMI, and CSF opening pressure were not predictive. Conclusions: Our findings confirm papilledema severity and male sex as prognostic factors identified in prior studies and extend them to a German real-world setting. This strengthens the external validity of existing evidence and underscores the importance of early recognition of high-risk patients to prevent irreversible visual loss.

Keywords: Idiopathic Intracranial Hypertension, Outcome, prognosis, visual outcome, Papilledema, Pseudotumor Cerebri

Received: 03 Sep 2025; Accepted: 27 Oct 2025.

Copyright: © 2025 Knoche, Varlet, Pohrt, Danyel, Haffner and Kowski. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) or licensor are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

* Correspondence: Theresia Knoche, theresia.knoche@charite.de

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