About this trial
Advances in medical care have extended the life expectancy of individuals with congenital and pediatric-onset diseases, leading to an increased need for effective transition programs as these individuals move from pediatric to adult healthcare. The STEPSTONES project in Sweden is designed to evaluate the effectiveness of a person-centered transition program to support teenagers with chronic conditions during this transition. The project's innovative digital adaptation, Digi-STEPSTONES, seeks to address challenges related to accessibility and continuity of care by delivering the program remotely. This study will assess the non-inferiority of the digital program compared to traditional, in-person care, focusing on outcomes such as patient empowerment, transition readiness, and quality of life. Additionally, the project will explore the implementation and scalability of the digital transition model across various chronic conditions. Preliminary studies have highlighted the importance of structured, person-centered care in improving empowerment and other outcomes in adolescents with chronic illnesses. The Digi-STEPSTONES project aims to provide crucial evidence for the digital delivery of transition programs, potentially enhancing the accessibility and effectiveness of care for young people with chronic conditions in Sweden.
Eligibility criteria
This trial does not accept healthy volunteersQualifiers
None
Disqualifiers
None
Trial design
Parallel
Treatments tested in this trial
Stepstones transition program
BehavioralThe STEPSTONES transition program is an 8-component intervention designed to support adolescents with chronic conditions transitioning to adult care. It includes: a transition coordinator (TC), education about the condition, phone support, guidance on transitioning to adult care, parental guidance, peer meetings, a personalized transition plan, and the actual transfer to adult care. The intervention is implemented in five steps, starting with outpatient visits and culminating in the transfer to adult care. Delivered via the "Mitt vårdmöte" digital platform, the program includes the HEADDDSS adolescent health interview and is conducted by trained specialized nurses.
Treatment groups
Trial outcomes
Primary outcomes
Patient empowerment
Gothenburg Young Persons Empowerment Scale (GYPES)
Secondary outcomes
Satisfaction with transition
Transitional care EXPeriences Questionnaire
Transition readiness
Readiness for Transition Questionnaire (RTQ)- adolescent version
Other outcomes
Transition readiness
Readiness for Transition Questionnaire (RTQ)-parent version PROXY
Sponsors and contacts
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