Group education improves self-management of adrenal insufficiency in patients and their relative.

Abstract

Objective: Self-management and patient education are cornerstones in managing adrenal insufficiency (AI) to prevent adrenal crisis (AC). Glucocorticoid (GC) education group meetings are increasingly being incorporated into regular healthcare. However, few studies have evaluated its effectiveness.

Design: This is a multicentre pre-post intervention study conducted at four university hospitals in Sweden between 2015 and 2019.

Methods: A total of 254 patients with AI along with 138 relatives were included. Participants attended a GC education group meeting led by an endocrinologist. Detailed guidance was provided on when and how to adjust GC doses to prevent AC together with instructions and supervised practice of hydrocortisone injections. Questionnaires on self-management were completed by both patients and relatives before the session and again 6 months later. In addition, patients also completed two HRQoL instruments.

Results: Patients with AI felt relatively safe and informed about their GC treatment at baseline. However, many lacked adequate knowledge on dose adjustments, including high-risk situations for AC. At follow up, 194 patients (76.4%) and 94 relatives (68.1%) completed the questionnaires. Both patients and relatives showed significant improvements in perceived safety and management of high-risk scenarios for AC. However, some knowledge gaps persisted. The education effort did not result in significant changes in HRQoL.

Conclusion: Structured GC education group meetings enhance the knowledge of patients and their relatives to manage AI safely. We consider this a valuable component of AI care.

Significance: We highlight the value of repeating sick-day rules and using group education to improve self-management in patients with AI and their relatives.