Take part to help us understand what it is like to experience an adrenal crisis, how you recognise the symptoms, manage the crisis, and seek emergency care.
Why this Study Matters
Adrenal crisis is a life-threatening emergency for people living with adrenal insufficiency, including Addison's disease. 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 Disease Self-Help Group (ADSHG) is leading on a UK project called The Real Story: Adrenal Crisis Management in the UK, one strand of which involves this 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 online questionnaire. 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
- Receive medical care in the United Kingdom (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 by completing the questionnaire even if you’ve never experienced an adrenal crisis - learning more about prevention is a vital part of this study.
This study 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. Become a member of our charity to be the first to hear.
How to take part
You have the option to complete the online questionnaire (we need as many responses as possible) and/or the 1:1 interview (limited number of places available).
Questionnaire
Complete the online survey if you have or even if you have not had an adrenal crisis. The more responses we get, the better. It is anonymous, so your answers can not be traced back to you. Click for further information and to read an introduction to the online survey (takes 20-25 mins).
1:1 interview
You must have experienced an adrenal crisis in the last 2 years to register for an interview. There are a limited number of places available. Your interview will not be linked to your online questionnaire, should you also submit that. Click for further information and read an introduction to the 1:1 interview (takes approx. 45 minutes).
Any information you provide will be handled in confidence, according to City St George's research data management policy.
Share with others, including your endocrine team
We’re aiming for at least 1,000 eligible people to take part in this survey, and we can’t do it without your support.
- Share the link on your personal social media
- Download the research study flyer by clicking on the link below, and email it to your endocrine team, asking them to share it with all their adrenal insufficiency patients
Every share gets us one step closer to 1,000 voices driving real change. Thank you for your help!
Download Research Study Patient Information Flyer
Thank you for supporting this significant and valuable research and helping highlight the realities of adrenal crisis management in the adrenal insufficiency community.
Research Lead: Dr Sofia Llahana
Associate Professor (Research) in Advanced Practice and Endocrinology, and ADSHG Clinical Advisory Panel member
adrenal.research@city.ac.uk