Mortality among patients with idiopathic intracranial hypertension enrolled in the IH Registry.

OBJECTIVE

To determine (1) if mortality among patients with idiopathic intracranial hypertension (IIH) enrolled in the Intracranial Hypertension Registry (IHR) is different from that of the general population of the United States and (2) what the leading underlying causes of death are among this cohort.

METHODS

Mortality and underlying causes of death were ascertained from the National Death Index. Indirect standardization using age- and sex-specific nationwide all-cause and cause-specific mortality data extracted from the Centers for Disease Control and Prevention Wonder Online Database allowed for calculation of standardized mortality ratios (SMR).

RESULTS

There were 47 deaths (96% female) among 1437 IHR participants that met inclusion criteria. The average age at death was 46 years (range, 20-95 years). Participants of the IHR experienced higher all-cause mortality than the general population (SMR, 1.5; 95% confidence interval [CI], 1.2-2.1). Suicide, accidents, and deaths from medical/surgical complications were the most common underlying causes, accounting for 43% of all deaths. When compared to the general population, the risk of suicide was over 6 times greater (SMR, 6.1; 95% CI, 2.9-12.7) and the risk of death from accidental overdose was over 3 times greater (SMR, 3.5; 95% CI, 1.6-7.7). The risk of suicide by overdose was over 15 times greater among the IHR cohort than in the general population (SMR, 15.3; 95% CI, 6.4-36.7).

CONCLUSIONS

Patients with IIH in the IHR possess significantly increased risks of death from suicide and accidental overdose compared to the general population. Complications of medical/surgical treatments were also major contributors to mortality. Depression and disability were common among decedents. These findings should be interpreted with caution as the IHR database is likely subject to selection bias.