Factors associated with vision loss in idiopathic intracranial hypertension patients with severe papilledema

Our aim was to compare factors associated with poor versus good visual outcomes in idiopathic intracranial hypertension (IIH) patients with severe papilledema at initial presentation.

Retrospective review of consecutive IIH patients (1/1/2013-6/10/2023) with severe papilledema (Frisén grade 4–5 and/or atrophy in at least one eye); Patients were divided into “poor visual outcome” (poor visual acuity and constricted visual field in at least one eye) and “good visual outcome” (good visual acuity and only mild visual field changes in both eyes) at >6 months for medically-treated patients and >3 months follow-up for surgically-treated patients.

We included 134 IIH patients with severe papilledema (70 had poor and 64 had good visual outcomes). No significant differences existed for age, gender, race, hypertension, haemoglobin, or cerebrospinal fluid opening pressure. The poor-outcome group had significantly greater BMI (mean 39.2 vs 35.1 kg/m², p = 0.004), and worse initial HVF-MD (–20.04 vs –5.81 dB, p < 0.0001). Poor-outcome patients saw more prior health-care providers (4.7 vs 2.4, p < 0.0001), with delayed neuro-ophthalmology encounters (58.5 vs 15.2 weeks, p = 0.001). 41.4% of poor-outcome patients were initially seen in outside emergency departments (ED) (vs 14.1% of good-outcome patients, p = 0.0005), while only 27.1% were seen by eye-care providers (vs 53.1% of good-outcome patients, p = 0.0027). No poor-outcome patients initially consulted our institution’s ED vs 7.8% of good-outcome patients.

Although patients with poor visual outcome did not seek medical care later than good outcome patients, they had delayed diagnosis/treatment because of prior outside ED visits and lack of prior eye-care provider evaluations, suggesting that early diagnosis and specialized management of papilledema is essential for patients with symptoms of intracranial hypertension.