2 – Factors Influencing Self-Management of Adrenal Crisis in Patients with Adrenal Insufficiency: A Qualitative Study

Journal article published in 2025- Factors influencing self-management of adrenal crisis in patients with adrenal insufficiency: a qualitative study

Journal article published in Endocrine Connections in 2025. Factors influencing self-management of adrenal crisis in patients with adrenal insufficiency: a qualitative study.

Plain language summary

  • People with adrenal insufficiency face life-threatening emergencies called adrenal crises, which need urgent treatment with hydrocortisone injections..
  • Simplified hydrocortisone delivery devices and systemic reforms are crucial to supporting self-management and minimising preventable hospitalisations and fatalities caused by adrenal crises.

  • In this study, 12 people shared their struggles, including complex injection procedures, severe symptoms which made self-injection challenging and limited support to manage these crises effectively.
  • Simpler injection devices, better information and improved training for healthcare staff could help people self-manage their condition better, prevent avoidable hospital admissions and save lives.

Key concepts identified

Abstract

Objective

  • Adrenal crisis is a life-threatening complication that requires urgent administration of parenteral hydrocortisone.
  • Current patient education interventions remain ineffective, contributing to preventable hospitalisations and deaths.
  • This study explored the lived experiences of individuals with adrenal insufficiency, focussing on the factors influencing self-management during adrenal crises.

Method

  • This qualitative study employed online semi-structured interviews with adults with adrenal insufficiency who had experienced at least one adrenal crisis in the past 3 years.
  • Participants were recruited via patient advocacy groups in the United Kingdom.

  • Data were analysed using an inductive thematic approach, allowing themes to emerge directly from the data without imposing predetermined categories.

Results

  • Twelve themes, grouped into four overarching domains, captured individual experiences of managing adrenal crises: i) knowledge and experience; ii) tools and training; iii) psychological and emotional impact; and iv) support and dependence on others.
  • Participants reported challenges including delayed diagnosis, difficulties recognising adrenal crisis symptoms and the complexity of the hydrocortisone injection process.

  • However, prior experiences of adrenal crises, patient education and advocacy resources fostered greater confidence in self-management.
  • Participants highlighted the need for simplified injection devices, clearer stress dosing guidelines, improved training for healthcare professionals and increased public awareness.

Conclusion

  • Findings from this qualitative study emphasize that effective adrenal crisis management requires patient-centered, evidence-based interventions focussing on education, healthcare professional training and public awareness.
  • Simplified hydrocortisone delivery devices and systemic reforms are crucial to supporting self-management and minimising preventable hospitalisations and fatalities caused by adrenal crises.

Key words – adrenal insufficiency – adrenal crisis – self-management –  hydrocortisone injection, – parenteral glucocorticoid therapy – sick day rules –  stress dosing

In this qualitative study, participants talk about their experiences in managing an adrenal crisis. Access journal article to read all participants' comments.
Quick summary – Pituitary Foundation UK - 2 min read
Key insights - AddisonsDisease.org – 3 min read
Abstract and summary from full text article - 4 min
Full text article - 20 min read
Note: Abstract and plain language summary reflect verbiage from the full text journal article. Bullet points are added to maximize clarity of the research.

Citation – Chua A, Yoeli H, Till D, Dashora U, Oyibo P, Drake WM, Cartwright M, Llahana S. Factors influencing self-management of adrenal crisis in patients with adrenal insufficiency: a qualitative study. Endocr Connect. 2025 Apr 28;14(5):e240651. doi: 10.1530/EC-24-0651. PMID: 40214077; PMCID: PMC12060673.

doi- 10.1530/EC-24-0651

Title – Factors influencing self-management of adrenal crisis in patients with adrenal insufficiency: a qualitative study.

Author info – 

1School of Health and Medical Sciences, City St George’s, University of London, London, United Kingdom
2Endocrinology Department, St. Bartholomew’s Hospital, Barts Health NHS Trust, London, United Kingdom
3Northern Lights Research Associates; Newcastle upon Tyne, United Kingdom
4Diabetes and Endocrinology, East Sussex Healthcare NHS Trust, East Sussex, United Kingdom
 
Correspondence – Correspondence should be addressed to A Chua: aldons.chua@city.ac.uk or to S Llahana: sofia.llahana@city.ac.uk
 

Declaration of interest – The authors declare that there is no conflict of interest that could be perceived as prejudicing the impartiality of the work reported.

Funding – AC received funding from Barts Charity to complete this study as part of a Masters by Research programme and an Endocrine Research Nurse Award in 2021 from the UK Society for Endocrinology.

Author contribution statement – AC and SL conceptualised the study and developed the methodology. AC collected and analysed the data, with contributions to data analysis and validation from SL, HY, MC and PO. SL, MC, PO, WD, DT and UD provided supervision and mentorship to AC throughout the research. SL oversaw the study. All authors contributed to manuscript revisions and approved the final version for submission.

Acknowledgment –The authors would like to thank all participants who took part in the interviews, the Addison’s Disease Self-Help Group, and the Pituitary Foundation for supporting recruitment and PPIE activities for this study.

Ethical considerations – The study was approved by the Ethics Committee at the School of Health and Psychological Sciences Health, City St George’s, University of London (ETH2223-1304). Each participant was assigned a unique study ID, and data handling complied with the Data Protection Act 2018, the General Data Protection Regulations 2016 and the Data Protection Bill, ensuring confidentiality and data integrity.

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