If you're a child or young person living with Addison’s disease, or their carer or family member - please consider completing this new research questionnaire from the team at Southampton Children's Hospital led by Nabil Boulos, Specialist Pharmacist in Paediatric Endocrinology and Diabetes.

What is the survey about?

Hydrocortisone can be a challenging medicine for children and young people with Addison’s disease to take. Through a national survey the team want to better understand how children, young people and their carers use the different hydrocortisone formulations available, how they prepare doses, and how using these formulations and methods affect their everyday lives.

How will my answers help?

Your answers will help endocrine teams across the UK focus their services to support you with things that matter most to you and your child. For example, helping specialist teams to make better decisions when recommending different formulations and methods of making up doses that will best fit the needs and lifestyle of each child and young person.

 Who can take part:

  • Patients under 18 years (or who are still under a paediatric service).
  • An adult parent or carer for a patient under the age of 18.
  • Are diagnosed with Addison’s disease (primary adrenal insufficiency).
  • Are currently taking regular hydrocortisone.
  • The questionnaire is open to residents in England, Scotland, Wales and Northern Ireland. This is due to discussion of specific medicine forms available in the UK

 

How to take part:

Click to complete the survey

Click here to download the study poster
If you have any questions about the survey, please contact Nabil Boulos on [email protected] 

Thank you, Nabil Boulos and the team at Southampton Children’s Hospital, for working to improve how children and young people who take hydrocortisone are supported. 

Addison's disease and adrenal insufficiency can strike at any age. We provide support and information around the specific issues facing children, teenagers and their families. From managing school to moving out and transitioning to hospital adult services.

Click here to visit out Children and Young People page

To receive updates on research, the latest expert guidance and ADSHG news join our charity to become a member. 

Join our charity