Contraceptive Counseling Prior to Neuro-Ophthalmology Referral in Idiopathic Intracranial Hypertension.

Background: Patients with idiopathic intracranial hypertension (IIH) have reported being told to discontinue their hormonal contraceptive, despite a lack of evidence in the literature. We aimed to determine the frequency of this counseling and explore the content of discussion that other providers gave to patients with idiopathic intracranial hypertension regarding their use of hormonal contraception before neuro-ophthalmic assessment.

Methods: A survey of female subjects, aged 18-50 years, who had been advised or counseled regarding idiopathic intracranial hypertension and hormonal contraception. They were asked additional questions depending on their responses.

Results: Attempted contact of 230 subjects resulted in a response rate of 37% for a total of 85 respondents. Twenty four subjects declined participation. The total number of subjects surveyed was 61. Nearly half of all surveyed subjects reported taking a form of contraception at the time of their idiopathic intracranial hypertension diagnosis. Nearly 1 in 4 subjects reported being counseled regarding idiopathic intracranial hypertension and contraception. One in 10 of subjects who reported taking a contraceptive at the time of their diagnosis recalled a recommendation to cease their contraceptive recommendation before seeing a neuro-ophthalmologist.

Conclusions: Nearly 10% of patients with idiopathic intracranial hypertension in our study who were taking contraception were inappropriately counseled to cease their use before neuro-ophthalmic referral. Ophthalmologists and neuro-ophthalmologists can help further benefit their patients by providing proactive education illustrating the lack of convincing evidence establishing a causal relationship between hormonal contraceptives and idiopathic intracranial hypertension.