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Growing up with the Young Endocrine Support System (YESS!): innovative e-technology to improve transition from paediatric to adult care

Growing up with the Young Endocrine Support System (YESS!): innovative e-technology to improve transition from paediatric to adult care

Status
Active, not recruiting
Phases
Unknown
Study type
Interventional
Source
NL-OMON
Registry ID
NL-OMON24682
Enrollment
160
Registered
2019-10-18
Start date
2019-12-01
Completion date
Unknown
Last updated
2024-02-28

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Congenital adrenal hyperplasia, hypogonadotropic hypogonadism, growth hormone deficiency, combined pituitary hormone deficiency, Turner Syndrome or Klinefelter syndrome.

Interventions

The study consists of 4 study arms: receiving the YESS! game and toolkit (group YT), receiving the control game and toolkit (group GT), receiving the toolkit only (group T) and receiving regular trans

Sponsors

Erasmus Medical Center
Lead Sponsor

Eligibility

Inclusion criteria

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

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.

Design outcomes

Primary

MeasureTime frame
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

MeasureTime frame
-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. -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. -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).

Contacts

Public ContactLaura de Graaff

Erasmus Medical University Hospital

l.degraaff@erasmusmc.nl+31618843010

Outcome results

None listed

Source: NL-OMON (via WHO ICTRP)