Idiopathic Intracranial Hypertension: A Case Study of Patient Engagement in the Treatment of a Chronic Disease

Maxwell J Gelkopf; Laura McAllister; Kia Gilani; Arun Ne Sundaram

doi:10.1177/23743735221094088

Idiopathic Intracranial Hypertension: A Case Study of Patient Engagement in the Treatment of a Chronic Disease

J Patient Exp. 2022 Apr 18:9:23743735221094088. doi: 10.1177/23743735221094088. eCollection 2022.

Authors

Maxwell J Gelkopf¹, Laura McAllister^{1

2

3}, Kia Gilani^{2

3}, Arun Ne Sundaram^{2

3}

Affiliations

¹ Department of Ophthalmology, Western University, Schulich School of Medicine and Dentistry, London, Canada.
² Ophthalmology & Vision Sciences, Sunnybrook Health Sciences Centre, University of Toronto, Toronto, Canada.
³ Division of Neurology, University of Toronto, Toronto, Canada.

Abstract

Idiopathic intracranial hypertension is a rare neurological disorder characterized by increased intracranial pressure, which can lead to visual loss and headaches. While medical therapy exists, weight loss is the only disease-modifying treatment. Weight loss is the only therapy that leads to sustained resolution of papilledema. Involving the patient in their disease management through patient engagement is a way to improve disease outcomes, and strengthen the therapeutic relationship. This feature discusses an overview of the disease, a patient's experience, and a physician's perspective.

Keywords: challenges; clinician–patient relationship; communication; medical decision making; patient engagement; patient expectations; patient perspectives/narratives; patient/relationship-centered skills.