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

Transition from paediatric to adult endocrinology is a challenge for
adolescents, their families and their doctors. Effectiveness of transition
varies between patients, the type of endocrine disorders and hospital
departments. Up to 25% of young adults with endocrine disorders is lost to
follow-up once they move out of paediatric care. This means that up to one in
every four young adults with serious endocrine disorders does not attend an
adult endocrine outpatients clinic anymore, which causes a deterioration of
their clinical condition. Non-attendance (N-A) constitutes a major health risk
for young adults since N-A can lead to serious and expensive medical
complications. Physical and psychological consequences of suboptimal endocrine
treatment can cause absenteeism from school or work.
In a pilot study, we have set out and analysed questionnaires among adolescents
and young adults for their opinion about the transition phase. The improvements
they suggested include an up-to-date website, the possibility for attending the
outpatients clinic in the evening hours and the use of modern technology, like
a personal endocrine health app or a serious game. Playing with the mobile
phone is the favourite pastime of many teenagers. In Europe, over 75% of 12-18
year old teenagers and over 90% of 18-25 year old young adults use a smartphone
on daily basis [7] and therefore, the ultimate way to reach adolescents is by
e-technology. This type of technology, however, is not yet available in the
endocrine setting. We have designed and developed a serious game especially for
adolescents with endocrine disorders. With this serious game, we aim to get
adolescents involved in their disease at an early stage of transition, in order
to 1) improve medical self-management and 2) reduce non-attendance (prevent
dropout). By playing the YESS! game the adolescent patient learns in an
informal and stepwise manner how to be a (medically) responsible young adult.
The game is both challenging and entertaining. The concept of a real-life game
has not yet been developed elsewhere and is unique in the field of
endocrinology. The game has already been developed and is ready for use. In
addition to the YESS! game, a transition-toolkit will be implemented to
facilitate the transition as well.

Primary Objective:
-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 Objectives:
-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).

Randomized controlled trial, a multicenter study, located in Spain, Belgium,
The United Kingdom and The Netherlands in paediatric or adult outpatient
clinics.
Total duration of study is 3 years (2 years when the first 12 months of
patients inclusion are taken into account)
-group YT: participants will play the YESS! game for a maximum of 15 minutes a
day for 8 days, between t=0 and t=6 months.
-group GT: participants will play the control game for a maximum of 15 minutes
a day for 8 days, between t=0 and t=6 months.
-All 4 groups (YT, GT, T and O): fill out the STARx questionnaires three times
during the first year of the transition phase (last questionnaire is filled out
at last visit before transfer).
-drop-out rate (i.e. number of missed appointments) will be assessed one year
after transfer (t=24 months).

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

The comparator:
-Group GT: receiving the control game and transition toolkit.
The control game is an app called *Snake *97*. It is free and can be downloaded
in the App Store as well. It is a remake of the original snake on the mobile
phone in 1997 in which the player moves the snake around and makes it *consume
food* (little dots) which causes the snake to grow longer. The goal is to make
the snake as large as possible. It has 12 difficulty levels.
-Group T: receiving the transition toolkit only.
-Group O: receiving usual transition care (no game or transition toolkit).

NB! Group YT, group GT, group T and group O will also receive usual transition
care.

The participants are not exposed to any risks. The YESS! and the control game
are safe apps played on a mobile phone or tablet. The burden consists of
filling out the STARx questionnaires and playing the YESS! or controle game.
The questionnaires will be filled out online at home at the start of the study
and after 6 and 12 months. Every 6 months the subject has an appointment at the
outpatient clinic. The participant can play the YESS! game for a maximum of 15
minutes a day to prevent game addiction. The control game could be played for
an unlimited amount of time, but will unlikely cause game addiction since the
game is not considered challenging or exciting enough.