{
  "abstract": "Introduction Idiopathic Intracranial Hypertension (IIH) is a disorder of increased intracranial pressure which disproportionately affects obese women of reproductive age. It classically presents with headache, vision changes, and pulsatile tinnitus. The most feared complication is permanent vision loss. Empty sella on MRI, elevated opening pressure on lumbar puncture, and papilledema serve as diagnostic indicators of IIH. However, IIH remains underdiagnosed; this is largely attributed to symptom overlap with primary headache disorders, such as migraines. The objective of this study is to estimate the prevalence of patients who may have been underdiagnosed among those with clinical and imaging features classically suggestive of IIH.Methods A retrospective review of the electronic medical record from a single high-volume academic institution (2010-2025) was completed. Patient inclusion was based on clinical and imaging features associated with high likelihood of IIH: female sex, BMI >30, empty sella on MRI, and at least one IIH-related symptom (headache, visual disturbance, or cognitive difficulty). Patients with a concomitant structural pathology on MRI were excluded. The primary outcome was the proportion of high-likelihood patients not diagnosed with IIH. The secondary outcome was the referral rate for lumbar puncture or venography. Subgroup analyses between IIH+ (formally diagnosed) and IIH- (not diagnosed with IIH) patients were performed.Results 458 patients met inclusion criteria, with 81.7% (n=374) not formally diagnosed with IIH. (Table 1) median age was 46 years (IQR 41-50). Median BMI was 36.22 (IQR 32.71-40.98) and did not differ between groups (p=0.29). Headache was the most prevalent symptom (97.8%). Visual symptoms were significantly more common in IIH+ patients (63.1% vs. 32.6%, p<0.001). Within this cohort of patients with a high likelihood of having IIH, only 33% were referred for neurointerventional evaluation, LP, or venography. Referral rates were markedly higher among IIH+ patients (79.8% vs. 22.5%, p<0.001). Among IIH+ patients, median time from initial encounter to formal IIH diagnosis was 34.20 months (IQR 5.67-86.43).Conclusions This study demonstrates that the majority of patients with features consistent with IIH remain undiagnosed, and an even smaller proportion are referred to neurointerventionalists. Consequently, patients may be being excluded from accessing emerging neurointerventional therapies with potential for meaningful impact on patient outcomes. Heightened awareness, systemic screening protocols, and clear diagnostic algorithms for IIH are needed to ensure timely diagnosis and improve patient quality of life.Disclosures Y. Patel: None. A. Sood: None. R. Sheffmaker: None. J. Ferro: None. J. Tudor: None. H. Shaikh: None.",
  "authors": [
    {
      "affiliations": [
        "Cooper Medical School of Rowan University, Camden, NJ"
      ],
      "name": "Y Patel"
    },
    {
      "affiliations": [
        "Cooper Medical School of Rowan University, Camden, NJ"
      ],
      "name": "A Sood"
    },
    {
      "affiliations": [
        "Cooper Medical School of Rowan University, Camden, NJ"
      ],
      "name": "R Sheffmaker"
    },
    {
      "affiliations": [
        "Cooper University Health Care, Camden, NJ"
      ],
      "name": "J Ferro"
    },
    {
      "affiliations": [
        "Neurological Surgery, Cooper University Hospital, Camden, NJ"
      ],
      "name": "D Tonetti"
    },
    {
      "affiliations": [
        "Neurology, Cooper University Health, Camden, NJ"
      ],
      "name": "J Khalife"
    },
    {
      "affiliations": [
        "Neurology, Cooper Neurological Institute, Camden, NJ"
      ],
      "name": "A Ballout"
    },
    {
      "affiliations": [
        "Neurosurgery, Rutgers University, Newark, NJ"
      ],
      "name": "P Patel"
    },
    {
      "affiliations": [
        "Beth Israel Deaconess Medical Center, Boston, MA"
      ],
      "name": "A Thomas"
    },
    {
      "affiliations": [
        "Cooper University Health Care, Camden, NJ"
      ],
      "name": "J Tudor"
    },
    {
      "affiliations": [
        "Cooper University Health Care, Camden, NJ"
      ],
      "name": "M Koneru"
    },
    {
      "affiliations": [
        "Cooper University Health Care, Camden, NJ"
      ],
      "name": "H Shaikh"
    }
  ],
  "title": "E-290 Estimated rates of underdiagnosis of idiopathic intracranial hypertension: a 15-year experience",
  "uid": "3817e12b-49e1-50c0-b665-a0dbf0d39c2d"
}