The patients’ perspective on the burden of idiopathic intracranial hypertension

Abstract

Background: Idiopathic intracranial hypertension (IIH) is characterized by increased intracranial pressure without evidence of a tumor or any other underlying cause. Headache and visual disturbances are frequent complaints of IIH patients, but little is known about other symptoms. In this study, we evaluated the patients’ perspective on the burden of IIH. Methods: For this cross-sectional study, we developed an online survey for patients with IIH containing standardized evaluations of headache (HIT-6), sleep (PROMIS Sleep Disturbance Scale) and depression (MDI) in relation to BMI, lumbar puncture opening pressure (LP OP) and treatment. Results: Between December 2019 and February 2020, 306 patients completed the survey. 285 (93%) were female, mean age was 36.6 years (± 10.8), mean BMI 34.2 (± 7.3) and mean LP OP at diagnosis was 37.8 cmH2O (± 9.5). 219 (72%) of the participants were obese (BMI ≥ 30); 251 (82%) reported severe impacting headaches, 140 (46%) were suffering from sleep disturbances and 169 (56%) from depression. Higher MDI scores correlated with higher BMI and increased sleep disturbances. Patients with a normalized LP opening pressure reported less headaches, less sleep disturbances and less depression than those with a constantly elevated opening pressure. Conclusion: In addition to headaches and visual disturbances, sleep disturbances and depression are frequent symptoms in IIH and contribute to the patients’ burden. Structured questionnaires can help to identify IIH patients’ needs and can lead to personalized and better treatment.

MRI features of idiopathic intracranial hypertension are not prognostic of visual and headache outcome

“…Studies investigating predictors of headache outcome in IIH are generally very scarce as most focus on visual outcome, likely because visual impairment is often considered more relevant and is also easier to measure in clinical practice. However, headache is indeed the main factor affecting quality of life in patients with IIH [28,29]. Thus, identifying predictors of headache outcome is an unmet need in IIH.…”

Idiopathic intracranial hypertension presenting with migraine phenotype is associated with unfavorable headache outcome

“…Thus, identifying headache phenotype at IIH diagnosis may be an easy way to estimate the risk of adverse headache outcome, consult patients accordingly and potentially focus on treating headache within the framework of guidelines for acute and prophylactic treatment of migraine. This is especially important as headache is the main factor affecting quality of life in patients with IIH [18,19].…”

Depression and anxiety in women with idiopathic intracranial hypertension compared to migraine: A matched controlled cohort study

“…1,2,10 While depression and anxiety have long been known to be associated with IIH, 11,12 there have been more modern evaluations both in adult and pediatric populations. [13][14][15][16][17] In one study which surveyed a large patient group, up to 56% had depression as measured by the Major Depression Inventory, with onethird in the survey actively taking antidepressant medicines. 15 Using the Neuropsychiatric Inventory Questionnaire (NPI-Q) in a small cohort, 86% reported psychiatric symptoms, with 83% having depression-anxiety syndromes.…”

“…[13][14][15][16][17] In one study which surveyed a large patient group, up to 56% had depression as measured by the Major Depression Inventory, with onethird in the survey actively taking antidepressant medicines. 15 Using the Neuropsychiatric Inventory Questionnaire (NPI-Q) in a small cohort, 86% reported psychiatric symptoms, with 83% having depression-anxiety syndromes. 16 More concerning was the Intracranial Hypertension Registry (IHR) cohort that found, compared to the general population, the risk of suicide was over six-times greater and the risk of death from accidental overdose was over three-times greater in IIH.…”

“…While depression and anxiety have long been known to be associated with IIH, 11,12 there have been more modern evaluations both in adult and pediatric populations 13–17 . In one study which surveyed a large patient group, up to 56% had depression as measured by the Major Depression Inventory, with one‐third in the survey actively taking antidepressant medicines 15 .…”