Optimizing Care Transitions in CHD

Trial details

Who runs it

The Hospital for Sick Children

Trial code

NCT07898384

Record updated

27 October 2026

Original description

Adolescents and young adults (AYA) with congenital heart disease (CHD) face psychosocial stresses as they transition to adult care. Parents of AYA with CHD also experience increased caregiver burden and psychosocial stresses. Peer support provided by a person with a similar experience has been found to improve disease self-management and psychosocial health outcomes in pediatric healthcare. However, many AYA with CHD still do not have access to formal social support resources. The aim of this study is to improve pediatric to adult transitions in healthcare by evaluating peer mentorship programs for AYA with CHD and their parents.Read full original descriptionShow less

Optimizing Care Transitions in Congenital Heart Disease: Pediatric to Adult Transition

Adolescents and young adults (AYA) with congenital heart disease (CHD) face psychosocial stresses as they transition to adult care. Parents of AYA with CHD also experience increased caregiver burden and psychosocial stresses. Peer support provided by a person with a similar experience has been found to improve disease self-management and psychosocial health outcomes in pediatric healthcare. However, many AYA with CHD still do not have access to formal social support resources. The aim of this study is to improve pediatric to adult transitions in healthcare by evaluating peer mentorship programs for AYA with CHD and their parents.

Established, online mentorship programs, iPeer2Peer(iP2P)/iParent2Parent, will be employed through a pilot feasibility waitlist randomized controlled trial with repeated measures across four sites. Eighty mentees (AYA and parents of AYA) will be recruited and randomized into intervention and control groups. Forty mentees in the intervention group will be matched 1:1 with 30 trained mentors (young adults and parents of AYA). AYA mentees will be matched with young adult mentors and parents of AYA will be matched with other parent mentors. These pairings will connect over 12 weeks through video calls and text messaging to provide peer support to improve self-management and psychosocial health outcomes.

Inclusion: AYA with CHD; diagnosed with moderate to severe CHD with an expected 5-year survival rate of more than 70% according to the treating cardiologist or a qualified healthcare professional,; 16-25 years old with the capacity to give consent,; able to speak and read English,; willingness to commit to 5-10 texts and/or calls of 20-30 minutes each with a peer mentor over a period of 12 weeks,; access to a device (e.g., smartphone, tablet, computer) capable of using free WhatsApp software; Parents of AYA with CHD; parent of an AYA between the ages of 16 and 25 with moderate to severe CHD with an expected 5-year survival rate of more than 70% according to the treating cardiologist or a qualified healthcare professional currently followed by SickKids,; access to a device (e.g., smart phone, tablet, computer) capable of using free WhatsApp software,; able to speak and read English, and (4) willingness to commit to 5-10 texts and/or calls of 20-30 minutes each with a parent mentor over a period of 12 weeks; Young adult mentors (1)21-30 year old with CHD (2) nominated by a member of their healthcare team as a good candidate to act in the mentor role based on maturity and emotional stability (e.g., good communication skills, positive adaptation and adjustment, strong support network), (3) willingness to commit to virtual peer mentor training, (4) able to speak and read English, (5) access to a device (e.g., smart phone, tablet, computer) capable of using free WhatsApp software; Parent mentors; parents of AYA with CHD between the ages of 21-30 year old; willingness to commit to virtual peer mentor training,; able to speak and read English,; access to a device (e.g., smart phone, tablet, computer) capable of using free WhatsApp software.

Exclusion: AYA mentees will be excluded if they: (1) have significant cognitive impairments as assessed by a qualified healthcare provider, or (2) have a diagnosis of an active psychological disorder (e.g., Major Depressive Disorder) likely to interfere with their ability to manage their care as determined by a qualified healthcare provider, or (3) received surgery for a CHD diagnosis in the last 6 months, or (4) have undergone a heart transplant, or (5) are participating in current peer support programs, or (6) are receiving end-of-life care; Parent mentees will be excluded if; they have significant cognitive impairments as assessed by a qualified healthcare provider, or; they have a diagnosis of an active psychological disorder (e.g., Major Depressive Disorder) likely to interfere with their ability to manage their child's care as determined by a qualified healthcare provider, or; their child received surgery for a CHD diagnosis in the last 6 months, or; their child has undergone a heart transplant, or; they are participating in current peer support programs, or; their child is receiving end-of-life care; Young adult and parent mentors; Significant cognitive impairments as assessed by a qualified healthcare provider, or; have a diagnosis of an active psychological disorder (e.g.: Major Depressive Disorder, etc.; determined through chart review by a qualified HCP) likely to influence assessment of health-related quality of life and/or interfere with their ability to manage their own care, or; are participating in other peer support or self-management interventions.

ClinicalTrials.gov NCT07898384