Evaluation of the Digital Delivery of Person-centered Transitional Care to Empower Adolescents With Chronic Childhood-onset Diseases: The Digi-STEPSTONES Study

What this Trial Is About

Advances in medical and surgical care have increased life expectancy for individuals with congenital and pediatric-onset diseases, resulting in many living with chronic conditions. This research evaluates the effectiveness of a person-centered transition program designed to support adolescents with chronic illnesses, such as asthma, allergy, and solid organ transplantation, as they move from pediatric to adult healthcare. The study aims to compare a digitally delivered version of this program, called Digi-STEPSTONES, with traditional in-person care, focusing on outcomes like patient empowerment, transition readiness, and quality of life. The study involves two groups: one receiving the Digi-STEPSTONES program remotely via the "Mitt vårdmöte" digital platform, and a historical comparison group who previously received the program in person. The transition program includes eight components, such as a transition coordinator, education, telephone support, peer meetings, parental guidance, and a personalized transition plan, delivered in five steps culminating in the transfer to adult care. Specialized nurses trained as transition coordinators will conduct the program digitally. Participants aged 15 to 20 will be assessed at ages 16 (baseline) and 18.5 (follow-up) using questionnaires covering patient empowerment, transition readiness, quality of life, and satisfaction with transition. Parents will also complete proxy questionnaires. The study will monitor program reach, fidelity, usability of the digital platform, and gather feedback from adolescents and healthcare providers. Data collection includes online questionnaires, interviews, and audio recordings of some digital meetings, with an emphasis on supporting adolescents in managing their health during this critical transition.

Digital Delivery of Person-centered Transitional Care