IIH Rose 35% in Seven Years

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This month, News in Review highlights selected papers from the original papers sessions at AAO 2023. Each was chosen by an Annual Meeting Program Committee subspecialty chair because it presents important news or illustrates a trend in the field. Only four subspecialties are included here; papers sessions will also be held in five other fields. For more information, see the Mobile Meeting Guide (aao.org/mobile).

Prompted by the lack of recent data on the prevalence of idiopathic intracranial hypertension (IIH) in the United States, researchers from Case Western Reserve University in Cleve­land conducted an investigation into IIH among Americans. Their findings indicate that IIH prevalence increased between 2015 and 2022. The study also revealed that the condition appears to be linked to the obesity epidemic, which disproportionately affects girls and Black women.

While the overall goal was to gain a better understanding of IIH prevalence, lead author Jacqueline Shaia, MS, said, “We also wanted to determine the prev­alence among minority populations and to see if minority populations are disproportionately affected.”

Methodology. The researchers analyzed data from a large national database, the TriNetX registry, which included more than 85 million Ameri­cans and 57 health care organizations. Using ICD-10 codes and strict exclu­sion criteria, they stratified occurrence rates by age, sex, race, and ethnicity.

Key findings. The analysis revealed three key findings. 1) IIH prevalence increased by 1.35 times over the seven-year period, with the number of affected individuals per 100,000 rising from 7.3 to 9.9. 2) In 2022, 22.7 of every 100,000 Black females were diagnosed with IIH versus 15.4 of every 100,000 in the all-female group. 3) IIH cases also increased significantly, by 10 individu­als per 100,000, among female pediatric patients ages 11 to 17.

Discussing the findings. The author said that the finding that Black women appear to be most affected is important “because there has been conflicting literature on whether IIH dispropor­tionately affects individuals of different races or ethnicities.”

Associated with obesity. Ms. Shaia said that in this study IIH is highly associated with obesity. “We looked at the obesity and BMI rates of individuals within the TriNetX registry and found that Black females have a higher BMI on average than the white female popu­lation and the average population,” she said. The findings suggest that increas­ing rates of obesity, particularly in fe­male, Black, and pediatric groups, may be driving the increased IIH prevalence in the United States, disproportionately affecting these populations.

Social determinants of health, such as access to health care and healthier foods, may play a role in IIH preva­lence, but more research is needed to better understand whether obesity is driving the increased prevalence of IIH. Ms. Shaia said that the findings also highlight the need for regular and con­sistent vision health care in the United States and that ophthalmologists can play a crucial role in identifying IIH earlier.

Study limitations. A key limitation of this study involves the challenge in diagnosing IIH. “IIH is a diagnosis of exclusion, making it challenging to identify without the entire identifiable medical record. Since we didn’t have this data, we could not confirm if the patients truly had disease,” Ms. Shaia said.

An expert weighs in. “This study provides an important update on the prevalence of IIH and the demographics of people with IIH. Neuro-ophthalmologists have been concerned that a rise in IIH would occur with increasing obesity rates, and this study confirms that suspicion,” said Prem Subramanian, MD, PhD, at the University of Colorado, who was not involved in this research.

“Prior research has shown that IIH outcomes may be worse in Black patients, and the finding here that Black women are disproportionately affected by IIH provides opportunities for clinicians to identify and reduce barriers to care that IIH patients may face,” he said.

—Patricia Weiser, PharmD

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Relevant financial disclosures: Ms. Shaia—Cleveland Eye Bank Foundation: S; National Center for Advancing Translational Sciences: S; NEI: S; Research to Prevent Blindness: S. Dr. Subramanian—None.

For full disclosures and the disclosure key, see below.

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