KidsETransplant Connected for the future

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Presentation transcript:

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

Pediatric liver transplantation Standard of care for end-stage liver disease in children 160 pediatric liver transplantations 1989-2016 Survival 92.5%

Pediatric liver transplantation Chronic conditionlife-long follow up 160 pediatric liver transplantations 1989-2016 Survival 92.5%

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

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

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

KidsETransplant Connected for the future ↑Understanding of the disease ↑Sense of responsability ↑Therapeutic adherence ↑ Survival and quality of life http://ekids.hcuge.ch

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

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)

In English, French, German and Italian www.ekids.hcuge.ch In English, French, German and Italian

KidsETransplant 3D virtual space called ‘the room’ Personal health record 3D virtual space called ‘the room’ http://ekids.hcuge.ch

KidsETransplant Connected for the future

KidsETransplant Connected for the future

Getting organized Diary Post-it© Text messaging

KidsETransplant Connected for the future

vKidsETransplant Connected for the future Medication Height/weight

KidsETransplant Connected for the future Diary Diet (Lab results)

KidsETransplant Connected for the future ↑Understanding of the disease ↑Sense of responsability ↑Therapeutic adherence ↑ Survival and quality of life http://ekids.hcuge.ch

KidsETransplant Connected for the future 70% Users n=214

KidsETransplant