Self-management in adrenal insufficiency - towards a better understanding

Area of Science:

• Endocrinology
• Internal Medicine
• Patient Health Education

Background:

• Adrenal insufficiency (AI) necessitates lifelong glucocorticoid (GC) replacement.
• Patients require careful dose adjustment during stress to prevent adrenal crises.
• Understanding patient knowledge and healthcare experiences is crucial for effective AI management.

Purpose of the Study:

• To evaluate the healthcare situation and knowledge of AI patients regarding GC replacement.
• To compare patient knowledge and experiences with physician perspectives.
• To identify areas for improved patient education and self-management.

Main Methods:

• A questionnaire-based survey was conducted among 33 AI patients at two German university hospitals.
• Data collected included patient satisfaction, information sources, GC replacement practices, and knowledge of AI management.
• Patient responses were compared with prior physician survey data.

Main Results:

• Most AI patients (97%) rely on their physician for information and are generally satisfied (89.7%) with treatment.
• However, approximately one-third reported disagreements with healthcare professionals regarding GC replacement.
• Significant knowledge gaps were identified in recognizing symptoms of GC over/under-replacement and appropriate dose adjustments in various situations, with no major differences noted between patients and physicians.

Conclusions:

• AI patients exhibit knowledge deficits concerning GC replacement therapy adequacy and management.
• Effective long-term management of AI requires specialized care from experienced physicians.
• Enhanced education for both patients and physicians is essential to empower patients for adequate self-treatment and improve overall AI care.