Abstract
Objectives
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Adrenal crisis is a potentially fatal complication of primary adrenal insufficiency (PAI) and the leading cause of death in this population.
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Knowledge and its application are crucial to prevention.
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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
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Cross-sectional study* comprising a researcher-administered telephone survey in SA and an online questionnaire in the UK.
* Cross-sectional studies are observational studies that analyze data from a population at a single point in time.
Patients
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A total of 286 individuals with PAI on glucocorticoid replacement therapy: 47 from SA and 239 from the UK.
Measurements
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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
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Knowledge levels were suboptimal across both cohorts, with 72% answering correctly for infection, 54% vomiting, 52% fever, and 40% emotional stress.
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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).
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Nearly a third of participants reported at least one adrenal crisis in the past year.
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Prior adrenal crisis experience correlated with higher knowledge scores (p = 0.049).
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Vulnerability scores correlated positively with adrenal crisis frequency in the SA cohort (r = 0.382; p = 0.008).
Conclusions
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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.
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Targeted education and support group engagement are needed to address knowledge gaps and reduce adrenal crisis incidence.
Summary publications of this study
Citation – Ross, I. L., Llahana, S., 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, 103(5), pp. 659-668. doi: 10.1111/cen.70006
Permanent repository link – https://openaccess.city.ac.uk/id/eprint/35538/
Link to published version – http://openaccess.city.ac.uk/
doi –10.1111/cen.70006
Keywords – adrenal crisis; cross‐country comparison; glucocorticoid stress dosing; knowledge assessment; primary adrenal insufficiency; self‐management; vulnerability.
Title – Identifying Knowledge Gaps in Individuals With Primary Adrenal Insufficiency: A Critical Step in Preventing Adrenal Crisis
Authors – Ross, I. L., Llahana, S., Anderson, M. M., Demeke, B., Minnie, E. M., Wass, J. A. H. & Henry, M.
Author associations – Ian L. Ross1 | Sofia Llahana2 | Michelle M. Anderson1 | Belene Demeke1 | Elouise M. Minnie1 |
John A. H. Wass3 | Michelle Henry4
1Department of Medicine, University of Cape Town, Cape Town, South Africa | 2School of Health and Medical Sciences, City St George’s, University of London, London, UK | 3Department of Endocrinology, Churchill Hospital, Oxford, UK | 4Centre for Higher Education Development, University of Cape Town, Cape Town, South Africa
Correspondence – Sofia Llahana (sofia.llahana@city.ac.uk)
Author Contributions – Ian L. Ross, Michelle Henry and Sofia Llahana conceptualised the study, developed the methodology, collected and analysed the data, and wrote the first manuscript draft. John A. H. Wass provided mentorship throughout the research. All authors contributed to manuscript revisions and approved the final version for submission.
Acknowledgments – We thank all individuals with primary adrenal insufficiency who participated in this study for their invaluable contributions. We also acknowledge the clinicians in South Africa who supported patient recruitment by disseminating invitations, and the Addison’s Disease Self‐Help Group (ADSHG) for their assistance in distributing the survey in the UK.
Data Availability – Datasets generated during the current study are not publicly available, but are available from the corresponding author on reasonable request.
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