The Lack of Broad Multidisciplinary Assessments in Children and Adolescents With Newly Diagnosed Idiopathic Intracranial Hypertension

BACKGROUND: In pediatric idiopathic intracranial hypertension (IIH) patients, 27-62% have been reported to have difficulties in one or more neurocognitive domains. Also higher rates of mental health issues have been reported, further underscoring the importance of evaluating broader support needs. We aimed to investigate to what extent children and adolescents with newly diagnosed IIH received broad multidisciplinary assessments, as well as educational and weight-management support. METHODS: A population-based single center cohort study, included patients younger than 18 years of age when diagnosed with IIH according to the Friedman criteria, during 2000-2020. A cross-sectional interview survey and retrospective chart review were performed to investigate the frequency of broad multidisciplinary assessments at IIH diagnosis and need of educational support. RESULTS: Interviews were conducted with 61% (28 of 46) identified patients. According to medical records (N = 46), assessments were conducted by a psychologist in 7%, a physiotherapist in 4%, a social worker in 4%, and a special education teacher in 0%. Among patients with overweight or obesity, 67% were referred to a dietitian for weight management support. Dietitian involvement was more likely in obese than overweight patients, 86% versus 38% (P = 0.04). In addition, 64% of the interviewed patients reported a need for educational support, of whom half (32%) did not receive adequate support in school. CONCLUSIONS: Broad multidisciplinary assessments were uncommon among pediatric patients diagnosed with IIH. There was a high unmet need for educational support. Routine monitoring for neurocognitive impairments and educational needs should be part of pediatric IIH management. A broad multidisciplinary approach would best meet this need.