1. KidsETransplant Connected for the future
V. McLin
S. Spahni
T. Boggini
A. Guardia
G. Vauvarin
M. Randriambelonoro
M. Steiner
R. Jaquier-Grant
A. Geissbühler
B. Wildhaber
Personalized Health in the Digital Age
23 September 2016

2. Pediatric liver transplantation
Standard of care for end-stage liver disease in children
160 pediatric liver transplantations
Survival 92.5%

3. Pediatric liver transplantation
Chronic conditionlife-long follow up
160 pediatric liver transplantations
Survival 92.5%

4. KidsETransplant Connected for the future
Disease understanding
Sense of responsibility
Lack of initiative
Warning signs
Adherence
Pediatricadult transition
Graft loss (19% at transition; 2.2x )
Patient death
Consequences

5. KidsETransplant Connected for the future
Understanding the disease
Cognitive methods
Multi-disciplinary approaches
Self-management
Pediatricadult transition

6. KidsETransplant Connected for the future
Understanding the disease
Cognitive methods
Multi-disciplinary approaches
Self-management
Pediatricadult transition

7. KidsETransplant Connected for the future
↑Understanding of the disease
↑Sense of responsability
↑Therapeutic adherence
↑ Survival and quality of life

8. Encouraging use in kids
KidsETransplant Connected for the future
Encouraging use in kids
Ease of use
Incentive
Serious gaming
6-13 years
Dorr et al 2007, Tenforde et al 2011

9. KidsETransplant Connected for the future T
Practical and medical information
Website (ekids.hcuge.ch)
PC or tablet
Web-based
Password protected login
Personal health record (KidsETransplant)

10. In English, French, German and Italian
In English, French, German and Italian

11. KidsETransplant 3D virtual space called ‘the room’
Personal health record
3D virtual space called ‘the room’

12. KidsETransplant Connected for the future

13. KidsETransplant Connected for the future

17. Getting organized
Diary
Post-it©
Text messaging

19. KidsETransplant Connected for the future

20. vKidsETransplant Connected for the future
Medication
Height/weight

21. KidsETransplant Connected for the future
Diary
Diet
(Lab results)

27. KidsETransplant Connected for the future
↑Understanding of the disease
↑Sense of responsability
↑Therapeutic adherence
↑ Survival and quality of life

28. KidsETransplant Connected for the future
70%
Users
n=214

29. KidsETransplant