7 May 2026
Adrenal Crisis Patient Survey
Together with City St George’s University of London, and the Patient Support Groups working with the UK adrenal insufficiency community (including AMEND), the research team are aiming for at least 1,000 responses to the survey. The more voices captured, the stronger the case for improving care, policy, and patient safety. Your experience matters – please take part and help make a difference!
Why this survey matters
Adrenal crisis can is a life-threatening emergency for people living with adrenal insufficiency. A UK national survey of 1,789 adults with adrenal insufficiency, led by Dr Sofia Llahana at City St George’s University of London in 2024 in collaboration with the ADSHG, the Pituitary Foundation, and clinicians from 28 NHS endocrine centres across the UK, found that adrenal crisis remains common and serious.
What we know so far
The study showed that nearly 1 in 3 people (32%) had experienced a crisis in the past year, and over half (54%) had experienced one since diagnosis. While most people had hydrocortisone emergency kits, only 18% were able to self-inject.
Importantly, those who self-injected were 34% less likely to be admitted to hospital compared with those needing emergency care (ambulance or A&E), showing how important it is to act quickly (please see here for a summary of this research). At the ADSHG, we know too, from your shared experiences, that many of you find the preparation and administration of emergency hydrocortisone challenging.
Important gaps remain in the research and we need a better understanding of how adrenal crises are managed in real-life emergency settings, as well as the full patient journey from early symptoms through to treatment and recovery.
What next?
Building on the earlier study, the Addison’s Self-Help Group is leading on a UK project called The Real Story: Adrenal Crisis Management in the UK, which involves a follow up survey and in-depth interviews to capture your experiences of preventing and managing adrenal crisis.
Together with City St George’s University of London, and the Patient Support Groups working with the UK adrenal insufficiency community, we are aiming for at least 1,000 responses to the survey. The more voices we capture, the stronger the case for improving care, policy, and patient safety. Your experience matters – please take part and help make a difference!
We will continue to share findings from this project as we collect and analyse the data.
The study was approved by the Ethics Committee, City St George’s University of London [ETH2425-1801]
How can you help?
Eligibility:
Please take part if you:
- Are aged 18 or over and receive medical care in the UK
- Have been diagnosed with adrenal insufficiency (of any type) which in our cases will be caused by removal of both adrenal glands through surgery (MEN2A/B, PPGL), or suppression with mitotane treatment (ACC).
- Are taking glucocorticoid replacement treatment, such as hydrocortisone or prednisolone tablets.
Please note: You can take part even if you have never had an adrenal crisis as learning more about prevention is an important part of this study.
This survey is open ONLY to people who live in and receive medical care in the United Kingdom. If you are based outside the United Kingdom, you will have the opportunity to take part in a separate international survey, which will be available in early summer.
How to take part
- Complete the online questionnaire: Click the following link for further information and read an introduction to the online survey. Follow the online instructions to complete the survey (takes 20 – 25 minutes) https://tinyurl.com/survey-adrenal-crisis
- Register for a 1:1 interview (optional): Click the following link for further information and read an introduction to the 1:1 interview (takes approx. 45mins). Follow the online instructions. https://tinyurl.com/interview-adrenal-crisis
We would greatly appreciate your contribution to both the survey and the interviews, although you are welcome to take part in either one. The survey is anonymous, so your responses cannot be traced back to you or linked to your interview.
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