Growing up With the Young Endocrine Support System (YESS!)
The YESS! study is designed for young people aged 15 to 20 who have certain long-term hormone conditions, like growth hormone deficiency or Turner syndrome. Moving from children's to adult healthcare can be tricky, and sometimes young people stop attending their appointments. This study hopes to make that easier. Researchers have created a game called YESS! and a 'transition toolkit' to help young people better manage their own health. They want to see if using these tools helps young people feel more confident about their health and attend their adult clinic appointments, compared to those who don't use them. The study involves different groups, some using the game and toolkit, some just the toolkit, and others receiving standard care.
At a glance
What is this study about?
Moving from children's doctors to adult doctors for a long-term health condition can be a big step for young people, their families, and even the healthcare team. Sometimes, up to a quarter of young adults with hormone conditions, like those affecting growth or adrenal glands, don't continue with their adult clinic appointments. This can lead to serious health problems that could have been avoided.
To help with this, a group of researchers has developed something called the YESS! game and a 'transition toolkit'. These tools are designed to help young people aged 15 to 20 become more involved and confident in managing their own health as they make this important change in their healthcare. The idea came from young people themselves, who suggested using technology to help them through this process.
This study aims to find out if using the YESS! game and toolkit can help young people manage their health better and continue attending their adult doctor appointments. The researchers believe that those who use these tools will feel more in control of their health and be less likely to miss their follow-up care compared to those who don't.
Key takeaways
- The study helps young people with hormone conditions manage their health.
- It uses a new game (YESS!) and a 'toolkit' to make the move to adult care easier.
- If eligible, you'll be 15-20 years old with certain hormone conditions.
- You'll complete questionnaires over one year to see if the tools help.
- Your regular medical care will stay the same throughout the study.
Who may be eligible?
This study is looking for young people aged between 15 and 20 years old. You might be able to join if you have been diagnosed with certain long-term hormone conditions. These include conditions like congenital adrenal hyperplasia, hypogonadotropic hypogonadism, growth hormone deficiency, combined pituitary hormone deficiency, Turner syndrome, Klinefelter syndrome, Addison's disease, androgen insensitivity syndrome, or thyroid dysgenesis.
However, you won't be able to take part if you don't have access to a mobile phone or tablet, as these are needed to use the game. Also, if you have a learning disability or find it hard to understand or speak the language used in the study, which would make it difficult to use the game, then this study might not be suitable for you.
Could this study suit you?
Answer these quick questions to see if you may be eligible. This is a guide only — the research team makes the final call.
- Are you between 15 and 20 years old?
- Do you have a diagnosis of one of the listed hormone conditions (e.g., Growth Hormone Deficiency, Turner Syndrome)?
- Do you have a mobile phone or tablet that you can use?
- Are you able to understand and communicate in English (or the study's language) without difficulty?
What does participation involve?
If you take part in this study, you'll be placed into one of four groups by chance. Some groups will receive the YESS! game and a special 'toolkit' (a set of cards with tips and activities). Other groups might receive a different game and toolkit, or just the toolkit, or simply continue with your usual care. No matter which group you're in, you will still receive your regular medical care.
The main way your progress will be checked is by answering questionnaires about how you manage your health and your transition to adult care. You'll complete these questionnaires at the start of the study and then again 6 months and 12 months later. The study will last for one year from when you join. There are no additional visits beyond your usual medical appointments required specifically for the study.
Potential risks and benefits
Locations (7)
- Ghent University HospitalVerified postcodeGhent, Belgium
- Erasmus Medical CenterVerified postcodeRotterdam, Netherlands
- Hospital Infantil Universitario Niño JesúsVerified postcodeMadrid, Spain
- Queen Elizabeth University HospitalVerified postcodeGlasgow, United Kingdom
- Royal Hospital for ChildrenVerified postcodeGlasgow, United Kingdom
- The Royal London Hospital (Barts Health NHS Trust)Verified postcodeLondon, United Kingdom
- University College London Hospital (UCL Institute of Child Health)Verified postcodeLondon, United Kingdom
Common questions
What is 'endocrine support'?
'Endocrine support' refers to help and care for conditions related to your hormones, which control many important body functions like growth and development.
What is a 'transition toolkit'?
It's a set of paper cards with activities, tips, and ideas designed to help you with managing your health as you move from children's to adult healthcare.
Do I have to play the game every day?
The study will tell you how often and for how long you're encouraged to use the game or toolkit. It's designed to fit into your life.
Will my regular doctors still look after me?
Yes, regardless of whether you join the study or which group you're in, you will continue to receive your usual medical care from your doctors.
What does 'lost to follow-up' mean?
This means that after young people move from children's to adult healthcare, sometimes they stop going to their appointments and doctors lose contact with them. This study hopes to reduce that.
How to find out more
Always speak to your GP or specialist before deciding to take part in a study.
Interested in taking part?
Discussion
Community discussion
Powered by our forum at community.patient.info. Please be respectful — this is not medical advice.