Background: Idiopathic intracranial hypertension (IIH) disproportionately affects women from socioeconomically disadvantaged communities, but specific social determinants of health have not been examined.
Methods: We used data from the National Institutes of Health's All of Us Research Program, an ongoing nationwide study of more than 300,000 diverse individuals in the United States. Height and weight were measured at baseline, and participants completed questionnaires about demographics, health care access, and quality of life. Women aged 18-50 years with IIH were identified through electronic health record data, excluding those with venous thrombosis, meningitis, hydrocephalus, or central nervous system neoplasms. We used logistic regression to compare questionnaire responses for IIH cases and controls, adjusting for age, race, ethnicity, annual income, and body mass index (BMI).
Results: We included 416 women with IIH and 107,111 women without IIH. The mean age was 38 years, and 49.3% identified as non-White. After adjusting for age, race/ethnicity, and BMI, women with IIH were more likely to be unemployed (odds ratio [OR] 1.40, 95% confidential interval [CI]: 1.14-1.71) and report delaying care because of difficulty affording copays (OR 1.47, 95% CI: 1.02-2.10) or specialist care (OR 1.52, 95% CI: 1.06-2.18). They also delayed care because of rural residence (OR 2.08, 95% CI: 1.25-3.47) and transportation limitations (OR 2.23, 95% CI: 1.55-3.20). Although women with IIH were more likely to be non-Hispanic Black (OR 1.66, 95% CI: 1.32-2.09), this association lost significance when controlling for BMI and income (OR 1.27, 95% CI: 0.96-1.68).
Conclusions: Women with IIH experience adverse social determinants of health beyond those associated with obesity alone.
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