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. - YESS

Status

Active, not recruiting

Phases

Unknown

Study type

Interventional

Source

NL-OMON

Registry ID

NL-OMON48266

Enrollment

Registered

2019-12-05

Start date

2019-12-01

Completion date

Unknown

Last updated

2024-04-15

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

Conditions

chronic hormone disease endocrine disorder

Interventions

The intervention Group YT: receiving the YESS! game and the transition toolkit. The YESS! game is a real-life game in which the player has to solve a mystery. The adolescent plays an active role in

Eligibility

Age

12 Years to 99 Years

Inclusion criteria

Inclusion criteria: - Aged 15 to 20 years old. - Diagnosed with congenital adrenal hyperplasia, hypogonadotropic hypogonadism, Turner Syndrome, Klinefelter syndrome, growth hormone deficiency, combined pituitary hormone deficiency, Androgen insensitivity syndrome, thyroid dysgenesis or Addison's disease

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 control game.

Design outcomes

Primary

Measure	Time frame
To investigate whether there is a difference in the Self-management and Transition to Adulthood with Rx (treatment) (STARx) questionnaire score at t=12 months minus the score at t=0 in group YT compared to group O.	—

Secondary

Measure	Time frame
-To investigate whether there is a difference in the STARx questionnaire score 6 and 12 months after inclusion minus the score at t=0 in group T compared to group O. -To investigate whether there is a difference in the Self-management and Transition to Adulthood with Rx (treatment) (STARx) questionnaire score at 12 months minus the score at t=0 in group YT compared to group GT and -T. -To investigate whether there is a difference in the Self-management and Transition to Adulthood with Rx (treatment) (STARx) questionnaire score at t=6 months minus the score at t=0 in group YT compared to group GT, -T and -O. -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).	—

Measure

Time frame

-To investigate whether there is a difference in the STARx questionnaire score 6 and 12 months after inclusion minus the score at t=0 in group T compared to group O. -To investigate whether there is a difference in the Self-management and Transition to Adulthood with Rx (treatment) (STARx) questionnaire score at 12 months minus the score at t=0 in group YT compared to group GT and -T. -To investigate whether there is a difference in the Self-management and Transition to Adulthood with Rx (treatment) (STARx) questionnaire score at t=6 months minus the score at t=0 in group YT compared to group GT, -T and -O. -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).

—

Countries

Netherlands

Outcome results

None listed

Source: NL-OMON (via WHO ICTRP)