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

• Published in: Journal of patient experience Vol. 9; p. 23743735221094088
• Main Authors: Gelkopf, Maxwell J, McAllister, Laura, Gilani, Kia, Sundaram, Arun NE
• Format: Journal Article
• Language: English
• Published: Los Angeles, CA SAGE Publications 01-04-2022; Sage Publications Ltd; SAGE Publishing
• Subjects: Hypertension; Medical treatment; Neurological disorders; Physician patient relationships; clinician–patient relationship; challenges; patient expectations; patient/relationship-centered skills; medical decision making; patient perspectives/narratives; communication; patient engagement
• ISSN: 2374-3735; 2374-3743
• DOI: 10.1177/23743735221094088

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.