Abstract
PURPOSE: Idiopathic intracranial hypertension (IIH) can be a debilitating disorder that is difficult to identify and treat. Failure to adequately manage IIH symptoms may force patients to present at emergency departments (EDs) seeking symptom relief. The purpose of this paper is to empirically characterize ED use by previously diagnosed IIH patients. DESIGN/METHODOLOGY/APPROACH: Patients diagnosed with IIH, and who registered with the Intracranial Hypertension Registry by 2014, were solicited for study inclusion. A survey was designed to elicit ED use during the period 2010-2012. Information on demographic and socioeconomic characteristics, IIH signs and symptoms, time since diagnosis, perspectives of ED use and quality of life was collected. Quality of life was assessed using an adaptation of the Migraine-Specific Quality of Life Questionnaire. Data were analyzed using descriptive statistics and nonparametric hypothesis tests. FINDINGS: In total, 39 percent of IIH patients used emergency services over the study period; those that did used the services intensely. These patients were more likely to be non-white, live in households making less than $25,000 annually, have public insurance and have received a diversional shunt procedure. Patients who used the ED were less likely to live in households making $100,000, or more, annually and have private insurance. Participants who used the ED had significantly lower quality-of-life scores, were younger and had been diagnosed with IIH for less time. ORIGINALITY/VALUE: ED staff and outside physicians can utilize the information contained in this study to more effectively recognize the unique circumstances of IIH patients who present at EDs.