People living with, or affected by, adrenal insufficiency, including Addison’s, are the experts in their own rare condition. Your personal story is the most powerful tool for driving change. We need your experiences to drive improvement.
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.
Find out more about the project below, including how to get involved.
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. 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)
- 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
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.
The online questionnaire is anonymous so your answers can not be traced back to you.
Complete the online questionnaire: Click the link below 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
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.
Register for a 1:1 interview (optional): Click the link below for further information and read an introduction to the 1:1 interview (takes approx. 45mins). Follow the online instructions.