Growing up with the Young Endocrine Support System (YESS!): innovative e-technology to improve transition from paediatric to adult care
- Conditions
- Congenital adrenal hyperplasia, hypogonadotropic hypogonadism, growth hormone deficiency, combined pituitary hormone deficiency, Turner Syndrome or Klinefelter syndrome.
- Registration Number
- NL-OMON24682
- Lead Sponsor
- Erasmus Medical Center
- Brief Summary
Not available
- Detailed Description
Not available
Recruitment & Eligibility
- Status
- Pending
- Sex
- Not specified
- Target Recruitment
- 160
Inclusion Criteria
Aged 15 to 20 years old.
- Diagnosed with congenital adrenal hyperplasia, hypogonadotropic hypogonadism, growth hormone deficiency, combined pituitary hormone deficiency, Turner Syndrome or Klinefelter syndrome.
Exclusion Criteria
-Lack of a mobile phone or tablet.
-Mental disability or language barrier leading to inability to use the YESS! game or the control game.
Study & Design
- Study Type
- Interventional
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method To investigate whether there is a difference in the Self-management and Transition to Adulthood with Rx (treatment) (STARx) questionnaire score in group YT compared to group O after 12 months
- Secondary Outcome Measures
Name Time Method -To investigate whether there is a difference in the Self-management and Transition to Adulthood with Rx (treatment) (STARx) questionnaire score in group YT compared to group GT and -T after 12 months. <br>-To investigate whether there is a difference in the Self-management and Transition to Adulthood with Rx (treatment) (STARx) questionnaire score in group YT compared to group GT, -T and -O after 6 months.<br>-To investigate whether there is a difference in the drop-out rate to the adult outpatient clinic in group YT compared to group GT, -T and -O during the first year after the last visit to the paediatric endocrinologist (i.e. one year after the moment of transfer, t=24 m). <br>