A new study, from researchers at City St George’s University of London, is looking to find out more about how people prevent and manage adrenal crisis events. We need you to tell us about your experiences of having an adrenal crisis, and how you spot the signs, manage the crisis and access emergency care.
Why this study matters
Adrenal crisis is a life-threatening emergency for people living with adrenal insufficiency. In 2024, we collaborated on a UK national study of 1,789 adults with adrenal insufficiency, looking at how people manage their adrenal insufficiency in daily life. This study was led by Dr Sofia Llahana, at City St George’s University of London, and supported by the ADSHG and clinicians from 28 NHS endocrine centres across the UK. It found that adrenal crisis remains common and serious.
Read the full results
Read the full results from the previous survey, carried out in 2024.
Find out moreWhat 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.
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.This new study, funded by the Addison’s Disease Self-Help Group, is a follow-up of the previous one. It involves an in-depth survey and one-to-one interviews to gather more data to build on the previous results. We are asking our community to get involved and share your experiences through completing the survey and giving interviews. This will help us build a bigger picture of what it is like to live with adrenal insufficiency and how adrenal crises are managed in emergency settings.
What happens next?
The Pituitary Foundation, along with other patient support groups and the Society for Endocrinology, are working towards improving care and daily management for people living with adrenal insufficiency. Through our collaborative project, ‘The Real Story: Adrenal Crisis Management in the UK, ‘ we can use the results of this study to improve quality of life and outcomes for people living with adrenal insufficiency.
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]
Who can get involved
You are able to 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)
- Are taking glucocorticoid replacement treatment, such as hydrocortisone or prednisolone tablets
Please note, you can take part 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
This survey takes around 20-25 minutes to complete and your results are anonymous.
Click the link below to find out more and take part.
Find out more
Register for a 1:1 interview (optional)
This interview will take around 45 minutes to complete. This is optional and you can choose to only do the survey if you wish.
Click the link below to find out more and sign up.
Find out moreWe 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.
Share with others, including your endocrine team
We would like as many eligible people to take part as possible, so need your help to share this survey opportunity.
What you can do to help:
- Share the link to this page on your social media
- Download and share this flyer – you can email it to your endocrine team and ask them to share it with their patients
- Share your own participation on social media, to inspire others to get involved!
