Abstract text (incl. figure legends and references)

Question

IIH is a known metabolic neuro-ophthalmologic disorder which is associated with body weight gain. One of the known commonest reasons why a woman of childbearing age would gain weight is pregnancy. What is the long-term impact of IIH diagnosed during pregnancy? Does pregnancy affect the visual and headache outcomes?

Methods

Evaluate key outcomes such as vision (LogMAR visual acuity; Humphrey visual field perimetric mean deviation (PMD) and optical coherence tomography (OCT)) and headache in a prospectively collected cohort within the IIH Life database (2012-2021). Comparison was made to those with a subsequent pregnancy, and those whom never become pregnant.

Results

377 patients had pregnancy data recorded. IIH diagnosed in pregnancy is rare. People diagnosed with IIH in pregnancy had worse structural visual outcomes (Mean OCT total retinal thickness), although comparable visual fields and acuity, compared to those who had a pregnancy during the disease course. None took intracranial pressure lowering medicines, few required a temporising lumbar puncture in the first trimester and less required sight saving surgery. Pregnancy during the IIH disease course did not adversely affect visual or headache outcomes. Headache outcomes showed variability reflecting the IIH cohort as a whole.

Conclusions

IIH patient monitoring during pregnancy is important, not only for maternal health but physician communication. Medical intervention is limited due to risk of teratogenicity. Those diagnosed with IIH in pregnancy, or those in whom IIH is exacerbated by pregnancy are more challenging to manage and require individualised care plans.