Disease Course and Long-term Outcomes in Pregnant Women With Idiopathic Intracranial Hypertension: The IIH Prospective Maternal Health Study

Mark Thaller, Victoria Homer, Susan P. Mollan, Alexandra Jean Sinclair*

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

Abstract

Background and Objectives: 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 effect 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 and 2021 and evaluated outcomes including vision (logarithm of the minimum angle of resolution visual acuity, Humphrey visual field perimetric mean deviation, and optical coherence tomography [OCT] imaging) and headache. Four cohorts were evaluated: those with IIH diagnosed for the first time while 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: Three hundred seventy-seven people with IIH agreed to participate in the IIH Life maternal health study. Mean follow-up was 17.5 months (SD 20.5). IIH diagnosed in pregnancy was rare. Patients diagnosed with IIH while pregnant had greater papilledema (mean OCT total retinal thickness +11.59 µm/mo [95% CI 1.25-21.93]), although they had comparable visual field and acuity measures compared with those with established IIH who became pregnant during their disease course (-1.2 µm/mo [95% CI -2.6 to 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 who never had a pregnancy. Headache outcomes showed variability reflecting the IIH cohort as a whole.

Discussion: A diagnosis of IIH while pregnant was rare but associated with more severe papilledema. Long-term visual outcomes in IIH were analogous irrespective of the timing of the pregnancy. These data are reassuring; however, close vigilance of IIH clinical features during pregnancy is recommended.

Original languageEnglish
Pages (from-to)E1598-E1610
Number of pages13
JournalNeurology
Volume100
Issue number15
Early online date7 Feb 2023
DOIs
Publication statusPublished - 11 Apr 2023

Bibliographical note

Funding Information:
IIH:Life database is funded by the Healthcare Quality Improvement Partnership, and IIHUK, a registered patient charity (number 1143522), supported this work. AJS has been funded during this study by Medical Research Council grant number MR/KO15184/1, National Institute of Health Research grant NIHR-CS-011-028 (clinician scientist fellowship), and Sir Jules Thorne Award for Biomedical Science (no grant number). The study sponsor and funders had no role in the study design, interpretation of the data, data collection, or drafting of the manuscript.

Publisher Copyright:
© American Academy of Neurology.

ASJC Scopus subject areas

  • Clinical Neurology

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