Growing up With the Young Endocrine Support System (YESS!)

Summary

Transition from paediatric to adult endocrinology is a challenge for adolescents, families and doctors. Up to 25% of young adults with chronic endocrine disorders are lost to follow-up ('drop-out') once the young adult moves out of paediatric care. Non-attendance and sub-optimal medical self-management can lead to serious and expensive medical complications. In a pilot study, adolescents suggested the use of e-technology to become more involved in the transition process. The investigators have designed and developed the YESS! game, a tool to help improve medical self-management in adolescents with chronic endocrine disorders. The hypothesis is that adolescents playing the YESS! game will show a larger increase in self-management score during the first year of transition and will have a lower drop-out rate at the adult endocrine outpatient clinic (OPC), compared to adolescents who do not play the game.

Conditions

• Congenital Adrenal Hyperplasia
• Hypogonadotropic Hypogonadism
• Growth Hormone Deficiency
• Combined Pituitary Hormone Deficiency
• Turner Syndrome
• Klinefelter Syndrome
• Addison's Disease
• Androgen Insensitivity Syndrome
• Thyroid Dysgenesis

Interventions

DEVICE

YESS! game

The YESS! game is a real-life game for smartphone or tablet in which the player has to solve a mystery. The adolescent plays an active role in the course of the story. This results in an interactive experience. During the game, the adolescent is challenged with regard to self-management and responsible behaviour in general life, with parallels to medical selfmanagement and responsible behaviour. The adolescent has to decide at several different moments whether to take action or not, whether to accept help or not and whether to share (fictive) confidential information or not. Other aspects that are covered are 'taking responsibility' and 'being on time'. The choices the adolescent makes throughout the game are registered in a coded manner, for later analysis. The game is available in Dutch, English and Spanish.

DEVICE

Snake '97

Snake '97 is a game for smartphone or tablet which is free and can be downloaded in the App Store. The game is a remake of the original snake on the mobile phone in 1997 in which the player moves the snake around and makes the snake 'consume food' (little dots) which causes the snake to grow longer. The goal is to make the snake as large as possible. The game has 12 difficulty levels.

OTHER

Transition-toolkit

The transition toolkit consists of paper cards with assignments, ideas and tips regarding medical self-management.

Sponsors & Collaborators

• dr. Laura C. G. de Graaff-Herder

  lead OTHER

Principal Investigators

• Laura CG de Graaff, MD PhD · Erasmus Medical Centre

Study Design

Allocation

RANDOMIZED

Purpose

SUPPORTIVE_CARE

Masking

DOUBLE

Model

PARALLEL

Eligibility

Min Age

15 Years

Max Age

20 Years

Sex

ALL

Healthy Volunteers

Yes

Timeline & Regulatory

Start

2024-12-01

Primary Completion

2026-12-01

Completion

2026-12-01

Countries

• Belgium
• Netherlands
• Spain
• United Kingdom

Study Locations