Abstract
Background/Objectives
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.
Subjects/Methods
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.
Results
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.
Conclusions
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.
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Data availability
The datasets generated during and/or analysed during the current study are not publicly available due to need to respect patient privacy but are available from the corresponding author on reasonable request.
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WB collected the data, designed the manuscript, prepared the first draft, figure, table, and panel. BBB, VB, and NJN designed the study, reviewed the data, prepared the manuscript, contributed to the discussion, critically edited the review, and approved its final version.
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None of the authors have any competing interest. VB is consultant for GenSight Biologics, Neurophoenix and Topcon. NJN is consultant for GenSight Biologics, Santhera/Chiesi, Stoke, and Neurophoenix; receives research support from GenSight Biologics and Santhera/Chiesi. VB, NJN are supported by the National Institutes of Health’s National Eye Institute core grant P30-EY06360 (Department of Ophthalmology, Emory University School of Medicine) and by a departmental grant from Research to Prevent Blindness (New York, NY). WB received a scholarship from Geneva University Hospitals, Geneva, Switzerland.
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Bouthour, W., Bruce, B.B., Newman, N.J. et al. Factors associated with vision loss in idiopathic intracranial hypertension patients with severe papilledema. Eye 39, 185–191 (2025). https://doi.org/10.1038/s41433-024-03408-3
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DOI: https://doi.org/10.1038/s41433-024-03408-3
