Examining the Time to Diagnosis in Idiopathic Intracranial Hypertension Presentations in a Specialist Eye Emergency Department

Abstract

Idiopathic intracranial hypertension (IIH) is a neurological disorder characterized by chronic headaches, cognitive difficulties, reduced quality of life, and rarely irreversible visual loss. Community diagnosis is often challenging due to unfamiliarity with current guidelines and a lack of clinical experience, leading to misdiagnosis and treatment delays, which can negatively impact visual recovery and quality of life. Our study examined the time to diagnosis and investigated the barriers to timely diagnosis in adults with newly diagnosed IIH. This retrospective, single-centre cohort study was performed at an Australian quaternary specialised ophthalmology/otolaryngology hospital. Patient data were retrieved from the emergency department (ED) electronic database for the study period ranging from September 1, 2022, to September 1, 2023, for 51 adults with a new diagnosis of IIH. The mean time to ED presentation from symptom onset was 132.2 days (SD = 283.8, range = 1-1767). Of the patients, 55% (28/51) presented to the ED within one month of symptom onset, 20% (9/51) within three months, and 25% (13/51) after three months. The mean time to final diagnosis from ED discharge was 31.2 days (SD = 28.6, range = 1-140). Furthermore, the final diagnosis was achieved for 65% (33/51) in one month, and 90% (46/51) in two months. The mean time to diagnosis from symptom onset was 163.3 days (SD = 312.3, range = 11-1800). Diagnosis of IIH can be difficult and is often delayed, usually due to a lag in being reviewed by an appropriate eye specialist. Our study highlights that a referral pathway to a specialist neuro-ophthalmology centre can result in a timely and accurate diagnosis for individuals suffering from IIH.