Visual prognosis in idiopathic intracranial hypertension: observations from a retrospective cohort in Germany

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.

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.

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.

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.