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Identifying Knowledge Gaps in Individuals With Primary Adrenal Insufficiency: A Critical Step in Preventing Adrenal Crisis

Ross, I. L., Llahana, S. ORCID: 0000-0002-3606-5370, Anderson, M. M. , Demeke, B., Minnie, E. M., Wass, J. A. H. & Henry, M. (2025). Identifying Knowledge Gaps in Individuals With Primary Adrenal Insufficiency: A Critical Step in Preventing Adrenal Crisis. Clinical Endocrinology, doi: 10.1111/cen.70006

Abstract

Objective
Adrenal crisis is a potentially fatal complication of primary adrenal insufficiency (PAI) and the leading cause of death in this population. Knowledge and its application are crucial to prevention. This study aimed to assess knowledge of glucocorticoid stress dosing and adrenal crisis prevention among individuals with PAI in South Africa (SA) and the United Kingdom (UK).

Design
Cross‐sectional study comprising a researcher‐administered telephone survey in SA and an online questionnaire in the UK.

Patients
A total of 286 individuals with PAI on glucocorticoid replacement therapy: 47 from SA and 239 from the UK.

Measurements
The survey included questions on knowledge of glucocorticoid adjustment during intercurrent illness or stress, vulnerability (SA cohort only), and factors precipitating adrenal crises (UK cohort only).

Results
Knowledge levels were suboptimal across both cohorts, with 72% answering correctly for infection, 54% vomiting, 52% fever, and 40% emotional stress. The UK cohort demonstrated significantly better knowledge (mean 49% correct, SD = 24.7) than the SA cohort (mean 34%, SD = 30.7; p < 0.001). Nearly a third of participants reported at least one adrenal crisis in the past year. Prior adrenal crisis experience correlated with higher knowledge scores (p = 0.049). Vulnerability scores correlated positively with adrenal crisis frequency in the SA cohort (r = 0.382; p = 0.008).

Conclusions
This is the first study to compare knowledge of adrenal crisis prevention in individuals with PAI across two countries with distinct healthcare services, highlighting significant knowledge gaps in both cohorts, particularly in the SA cohort. Targeted education and support group engagement are needed to address knowledge gaps and reduce adrenal crisis incidence.

Publication Type: Article
Additional Information: © 2025 The Author(s). Clinical Endocrinology published by John Wiley & Sons Ltd. This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
Publisher Keywords: adrenal crisis, cross‐country comparison, glucocorticoid stress dosing, knowledge assessment, primary adrenal insufficiency, self‐management, vulnerability
Subjects: R Medicine > RA Public aspects of medicine > RA0421 Public health. Hygiene. Preventive Medicine
Departments: School of Health & Medical Sciences
School of Health & Medical Sciences > Nursing
SWORD Depositor:
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