Survey: Lived experience & Quality of life
Call for participants – “Exploring the lived experiences and quality of life of individuals affected by CAH”
If you’re 18 years and over and living with CAH, tell us how CAH affects your life in an individual discussion held at a convenient time face-to-face or online.
The aim of this study is to find out how CAH affects the quality of life of people affected by this condition. We will be carrying out interviews with people affected by CAH to find out how having this condition affects people’s daily lives and well-being at different stages in their life. The study findings will be used to help us develop a quality of life questionnaire that focuses on the unique issues affecting people with CAH. The questionnaire could eventually be used by health professionals and researchers to improve the care of individuals with the condition.
Individuals over the age of 18 with a diagnosis of CAH are eligible to take part in this study. Partners or relatives of people with CAH are also welcome to participate. The study will involve a one-to-one online or face-to-face interview at a convenient date and time. We expect the interviews to last about an hour. A £20 Amazon voucher will be provided to people who take part as reimbursement for their time.
The research is being led by Professor Aled Rees, Professor of Endocrinology and Consultant Endocrinologist Cardiff University, in collaboration with Cardiff Metropolitan University and Living with CAH. The study has been approved by the Cardiff University School of Medicine Research Ethics Committee: 24/32.
If you are interested in taking part in the study, download the flier here.
Recent Blog Posts
Webinar: Quality of life and fertility in CAH – 21st November 2026
The European Society for Endocrinology (ESE) is running a free webinar focussing on CAH on 21st November 2026. Hear from patients and clinicians from across Europe as the subjects of health-related quality of life and preserving fertility across the lifespan are...
Supporting Safer Adrenal Crisis Care
The Addison’s Disease Self-Help Group (ADSHG) has launched a national advocacy campaign to improve emergency treatment and patient safety for people at risk of adrenal crisis. The campaign was sparked by the discontinuation of liquid hydrocortisone in the UK, which...
Pituitary Awareness Month (October) – Symptoms in the Spotlight
October is Pituitary Awareness Month. Although not CAH, some of the information from the Pituitary Foundation may be helpful for those living with CAH. Find out more at the Pituitary Foundation's website here. Header image from Pituitary Foundation UK. Recent Blog...