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  • Neuro-Ophthalmology/Orbit

    Idiopathic intracranial hypertension (IIH), a rare but serious vision-threatening disease, is on the rise in the United States according to a retrospective analysis of data from more than 85 million patients in a large US claims database, particularly among women aged 11–17 years and those of certain racial or ethnic minority groups. Importantly, the increase in IIH incidence appears to parallel an increase in obesity in these subgroups, although determining causation is outside the scope of this study.

    Study Design

    This cross-sectional epidemiologic study evaluated IIH prevalence and racial disparities in the United States using 2015–2022 TriNetX US Collaborative network data. Patients with definite IIH and papilledema were included in the study. Idiopathic intracranial hypertension trends were also compared with TriNetX cohort obesity trends.


    Among 85 million patients included in the database, the prevalence of IIH was 1.35 times higher in 2022 than in 2015, increasing from 7.3 individuals per 100,000 population to 9.9 individuals per 100,000 population, respectively. In 2022, Black female individuals had the highest prevalence of IIH (22.7 individuals per 100,000), followed by Hispanic females and White females. From 2015 to 2022, the largest growth in IIH prevalence occurred among patients aged 11–17 years, with prevalence of IIH increasing in females, specifically, by 10 individuals per 100,000 population. Overall, Black and Hispanic patients had the largest prevalence odds ratio (OR) of IIH (OR 1.66 and 1.33, respectively). The prevalence of obesity (defined as BMI greater than 30 kg/m2) increased by 1.5% in the total population from 2015 to 2022. Within the adolescent population (age 11–17 years), obesity prevalence rose 4.87% by 2022, with Black females having the highest prevalence (43.55%), followed by Hispanic females (38.24%).


    This study was based on ICD coding and likely underreported IIH because the dataset was only representative of patients who obtained medical care from a TriNetX-associated healthcare system.

    Clinical Significance

    Similar to findings reported in the United Kingdom,1 these findings show increasing IIH prevalence in the US population, particularly among adolescents and females of Black or Hispanic race/ethnicity. This is a major healthcare concern, especially given the ongoing rise in obesity. The organization of multidisciplinary IIH Centers that involve ophthalmologists (to monitor vision), neurologists (to treat headaches), and endocrinologists and nutritionists (to treat obesity) may help to optimize the care of patients with this chronic, debilitating disorder, especially if these programs are targeted to benefit historically underserved patient populations.

    Financial Disclosures: Dr. Valerie Biousse discloses financial relationships with GenSight Biologics and Neurophoenix (Consultant/Advisor).


    1 Adderley N, et al., JAMA Neurology. 2019;76(9):1099-1098.