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TOPLINE:

The US prevalence of idiopathic intracranial hypertension (IIH) increased significantly between 2015 and 2022. Black and Hispanic women experienced the greatest increases, possibly due to higher rates of obesity, new research revealed. 

METHODOLOGY:

• Researchers used the large TriNetX US Collaborative Network database to evaluate the prevalence of idiopathic intracranial hypertension (IIH), a rare vision-threatening disease mainly affecting overweight or obese women of reproductive age, from 2015 to 2022.
• TriNetX includes more than 50 health care systems and holds data from electronic health records of more than 85 million patients.
• Only patients with an International Classification of Diseases code of IIH and papilledema or unspecified papilledema were included in the study.
• Researchers determined prevalence of IIH per 100,000 in total and within groups by sex, age, and race/ethnicity, and calculated prevalence odds ratios (ORs) with 95% CIs.

TAKEAWAY:

• From 2015 to 2022, t he prevalence of IIH increased by 1.35 times from 7.3 (95% CI, 6.9-7.7) per 100,000 to 9.9 (95% CI, 9.5-10.3) per 100,000, with pediatric cases having the largest increase, from 2.5 to 12.5 per 100,000.
• During the study period, rates increased among women from 11.3 to 15.4 per 100,000, with the rate increasing from 17.5 to 22.7 per 100,000 among Black and Hispanic women experiencing the largest increase of any racial or ethnic group.
• Compared with White men, all female groups had an increased prevalence OR of an IIH diagnosis, with Black women having the largest OR at 1.66 (95% CI, 1.49-1.85), and Hispanic women the second largest at 1.33 (95% CI, 1.14-1.56).
• Overall, the prevalence of obesity (body mass index > 30 kg/m²) increased by about 1.5% from 2015 to 2022, with women having a higher prevalence (27.14%) than men (23.06%), Black women had a 9.93% higher prevalence than other women, and children showed a large increase (from 0.73% in 2015 to 5.60% in 2022).

IN PRACTICE:

"IIH is a rapidly increasing health care concern for the US population," the investigators wrote. They noted that IIH treatments are limited making it difficult to manage the often-debilitating headaches as well as the depression, anxiety, and suicidality in this patient population. 

SOURCE:

The study was conducted by Jacqueline K. Shaia, MS, Case Western Reserve University School of Medicine and Center for Ophthalmic Bioinformatics Research at the Cole Eye Institute, Cleveland, Ohio, and colleagues. It was published online on January 5, 2024, in Neurology.

LIMITATIONS:

The research may not have eliminated all nonidiopathic causes of intracranial hypertension. The number of IIH cases is likely higher than reported because the dataset includes only patients who obtain medical care from a healthcare system represented on TriNetX. As there were too few patients aged < 11 years, researchers couldn't obtain information on this age group from the database.

DISCLOSURES:

The study was supported by the Clinical and Translational Science Collaborative of Cleveland. Shaia reported receiving funding through the National Eye Institute; see paper for disclosures of other authors.