Do you have adrenal insufficiency? Dr Sofia Llahana, NIHR Post-doctoral Clinical Lecturer and Endocrine Consultant Nurse, is inviting you to complete their survey as part of the next stage of their international research study involving people with adrenal insufficiency and their families.

The aim of the study is to explore and measure the factors that influence people with adrenal insufficiency’s ability to self-manage their condition, with the objective to develop an online self-management platform guided by behaviour change theory. It also aims to inform the development of a Position Statement on standards for patient education and support services for people with adrenal insufficiency and those who support them.  

The study has been endorsed by the Society for Endocrinology, the European Society for Endocrinology , fellow patient support group The Pituitary Foundation and we are delighted to say is in part funded by the Addison’s Disease Self Help Group (ADSHG) research grants.

Read our 'Meet the Researcher' article with Dr Llahana here

Thank you to the ADSHG community who took part in this first stage of the study, which involved 19 online focus group interviews (group discussions of 5-7 participants) with people with adrenal insufficiency and family members from the UK, USA and Canada. Participants shared their perspectives and experiences regarding factors that influence the patient’s ability to manage their treatment and condition.  

These findings have guided the development of a questionnaire for an online survey aiming to measure barriers and enablers to self-management of adrenal insufficiency on a day-to-day basis (cortisol replacement), sick days (illness and emotional stress), and prevention and management of adrenal crisis. It also aims to gather data on current patient education and care service provision for patients with adrenal insufficiency.  

Click to complete the online survey

As a “thank you!” for your contribution by completing this survey, the research team will donate £3 for every completed questionnaire to the ADSHG and The Pituitary Foundation. Thank you to the research team for this generous donation to our charities.

Who can take part:

• People who live and receive medical care in the United Kingdom.
• People who have adrenal insufficiency themselves, caused by Addison’s disease, pituitary conditions, CAH or other causes and are on steroid replacement, e.g. daily Hydrocortisone tablets.
• Over the age of 18 years old.

For our international members, an international survey in English and several other languages will be conducted in 2023; more details will be announced in due course.  

How to take part:

• Follow the link or the QR code to find out more about the study and to take part.
• The survey should take between 20-30 minutes.
• The survey is open until February 2023.

The study is entirely voluntary and participants are free to withdraw at any time. Your answers will be anonymous with no possibility to trace responses back to individuals.

	If you have any questions about this study, please contact Dr Sofia Llahana on e-mail: [email protected]
	Click here to download the 'Self-management for patients with Adrenal Insufficiency' survey poster
	Complete the online survey: Self-management for patients with Adrenal Insufficiency

 

Thank you Dr Sofia Llahana for researching further into this rare area of endocrine research for the benefit of those living with Addison’s and adrenal insufficiency.

The ADSHG receives regular approaches from researchers who are seeking our assistance with recruiting participants for their scientific projects. These approaches range from requests to publicise online questionnaires, to requests to assist with long-term clinical trials. Click here to more read more about our research application process

Whether you're newly diagnosed or have lived with the condition for years - please join our community and support our cause! You'll receive the latest expert advice, guidance and ADSHG news, whilst being part of our inspiring and supportive community. Become a member today! 

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