Long-term headaches in children with idiopathic intracranial hypertension—a 10 years follow-up

Introduction Idiopathic Intracranial Hypertension (IIH) is characterized by increased intracranial pressure, often accompanied by headaches, which were traditionally expected to resolve with pressure reduction. The aim of present study was to assess the prevalence of persistent headache and quality of life 10 years after the initial diagnosis of IIH and to determine the factors, at the time of the diagnosis, that predict associated with these ongoing symptoms. Materials and methods In a cross-sectional multicenter cohort study, patients diagnosed with IIH (all included patients met the Friedman criteria) in 2007–2012 were contacted by telephone at least 10 years after initial diagnosis, in 10.24–12.24. Participants responded to two questionnaires: the HIT-6, to evaluate headache burden, and the WHOQOL-BREF quality-of-life questionnaire. Results Of the 98 patients, 81 were recruited for the study. Mean age at IIH diagnosis was 13 (±2) years and mean age at follow-up was 24 (±5) years. Sixty-six percent (54/81) were females. Of these, 47 patients (58%) were experiencing headaches at the time of follow-up, with no significant difference between the sex. Relative to the no-headaches group, those with headaches at follow-up had higher BMI (32 vs. 25, p = 0.041) and lower quality of life (QoL). Within the headaches at follow-up group, those with more significant headache burdens (HIT-6 levels 3–4) were older, had higher BMI, and had lower QoL relative to those with lower headache burdens ( p = 0.020, p = 0.006, p = 0.010 respectively). Conclusions A large proportion of patients with IIH continue to suffer from headaches many years after initial diagnosis, with negative effects on their quality of life. Clinical Trial Registration: ClinicalTrials.gov , Identifier NCT06581185.