Effectiveness of the digital delivery of transitional care to empower adolescents with chronic childhood-onset diseases: The Digi-STEPSTONES study

Medical advances in pediatric-onset diseases yielded an increased life expectancy, and such diseases evolved into chronic conditions. To prepare adolescents to take on new responsibilities when they grow up, transition programs have been developed.

Such programs are delivered in clinics, posing extra burden on adolescents and triggering attrition.The Digi-STEPSTONES study aims to develop and test the digital delivery of an inclusive, person-centered transition program to empower adolescents with chronic childhood-onset diseases in becoming active partners in their health and care.

A total of 126 adolescents with asthma, congenital heart disease, diabetes, or solid organ transplantation will be included in a randomized controlled trial (RCT), to test the superiority of the digital delivery of transitional care compared to usual care.

To evaluate the non-inferiority of the digital delivery, we will compare the outcomes in the intervention group of Digi-STEPSTONES with data from the prior STEPSTONES-CHD and STEPSTONES-DIAB studies.

Causal inference techniques will be employed.People with cognitive problems are often excluded from transitional care trials.

To understand how transitional care ought to be adapted to the needs of young people with cognitive impairments, and to make transitional care more inclusive, we will conduct a qualitative study with young people with congenital heart disease who have cognitive disabilities and their parents/guardians.