Disease Course and Long-term Outcomes in Pregnant Women With Idiopathic Intracranial Hypertension: The IIH Prospective Maternal Health Study
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Abstract
Background: Idiopathic intracranial hypertension (IIH) most typically occurs in women of childbearing age with increased weight as a key risk factor for development or exacerbation of the disease. Pregnancy is common in this group of patients. The longer-term impact of pregnancy on IIH has not been established and was the aim of this study.
Methods: A prospective cohort study (IIH Life) recruited consecutive patients with IIH between 2012-2021 and evaluated outcomes including: vision (LogMAR visual acuity; Humphrey visual field perimetric mean deviation (PMD); optical coherence tomography (OCT) imaging) and headache. Four cohorts were evaluated: those with IIH diagnosed for the first time whilst pregnant; those with established IIH who became pregnant; those with a pregnancy prior to their diagnosis of IIH; and those with IIH who never became pregnant.
Results: 377 people with IIH agreed to participate in the IIH Life maternal health study. Mean follow up was 17.5 months (standard deviation (SD) 20.5). IIH diagnosed in pregnancy was rare. Patients diagnosed with IIH whilst pregnant had greater papilloedema (mean OCT total retinal thickness +11.59 µm/month (95% CI: 1.25, 21.93)), although they had comparable visual field and acuity measures compared to those with established IIH who became pregnant during their disease course (-1.2 µm/month (95% CI: -2.6, 0.21)). In those with established IIH, pregnancy did not adversely affect visual or headache outcomes over time and the trajectory was akin to those with IIH that never had a pregnancy. Headache outcomes showed variability reflecting the IIH cohort as a whole.
Discussion: A diagnosis of IIH whilst pregnant was rare but associated with more severe papilloedema. Long term visual outcomes in IIH were analogous irrespective of the timing of the pregnancy. This data is reassuring however close vigilance of IIH clinical features during pregnancy is recommended.
- Received August 11, 2022.
- Accepted in final form December 7, 2022.
- Written work prepared by employees of the Federal Government as part of their official duties is, under the U.S. Copyright Act, a “work of the United States Government” for which copyright protection under Title 17 of the United States Code is not available. As such, copyright does not extend to the contributions of employees of the Federal Government.
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