A transition program for youth with CHD to adult care to improve autonomy and quality of life

What is it about?

This research study evaluated a transition to adult care program for young people ages 13-25 with congenital heart disease. Participants randomized to the treatment group participated in a three-visit series. The first visit was an educational outpatient visit to determined personalized educational objectives and care needs. The second visit involved a group session with similar-aged peers and the patients' relatives with a variety of care providers, including a psychologist that addressed medical information, living with CHD, an administrative workshop, and reviewing a personalized education report. The last visit was a transfer preparation visit that took place about six months after the group session. participation in the group was associated with improved reports of quality of life, psychosocial wellbeing, physical health, and in disease knowledge compared to the control. Some challenges arose in this study and 30% of participants in the intervention group did not complete all visits in the program, but initial results suggest that engagement in these programs may be beneficial to young people at a key period of transition in their health.

Featured Image

Photo by Vitaly Gariev on Unsplash

Photo by Vitaly Gariev on Unsplash

Why is it important?

Transition cliffs in care are common between adolescence and emerging adulthood and can be particularly concerning for medically complex patients who need ongoing care and are growing in their independence. Increased disease knowledge, navigating health care appointments, and self-efficacy around medical management are often major demands on young people in this period. This study suggests that even a three-session intervention (two of which are medical clinic visits) may be associated with improved quality of life, disease knowledge, and self-reported perceptions of physical and mental health. Anticipating these transitions and providing structured support could be beneficial for these young people.