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QUEBEC CITY — A structured and validated peer mentorship program may help young patients with congenital heart disease (CHD) transfer more smoothly from pediatric to adult care, according to research presented at the Canadian Cardiovascular Congress (CCC) 2025. 

Mentorship programs could play an important role in the care of youths with CHD because these patients “are going to be living with this [condition] lifelong,” presenter Tieghan Killackey, PhD, registered nurse and assistant professor of nursing at the University of Toronto, told Medscape Medical News. “They’re going to be engaging with the medical system, having procedures, having surgeries. It potentially impacts pregnancy. And there’s a genetic [component] to consider. It impacts so many areas of their lives.” 

Enrolling these young patients in a mentorship program early on gives them “tools to manage their illness a little bit more” as they move into an adult setting, she said. “And they also feel supported.”

Transition Readiness

Killackey and colleagues evaluated the feasibility and potential benefits of the iPeer2Peer Mentorship Program, a patient-centered, personalized mentorship program that connects youths with CHD with young adult mentors who also have CHD. The program was used successfully in other pediatric settings, such as chronic pain and cancer, where youths experienced improvements in disease self-management and coping.

The impetus to try it in patients with CHD arose during the COVID pandemic, Killackey said, when providers saw “spiking rates” of social isolation, anxiety, and depression among these patients. There was growing awareness of the potential role of mental health and social support in young patients with CHD.

For their convergent, parallel mixed-methods pre-post study, researchers recruited five mentors (three females and two males) with an average age of 22.4 years from the Toronto General Hospital’s adult CHD clinic. Mentors completed a 2-day virtual training, after which they could provide social support, encouragement, and guidance to affected young people. The specific aim of the program was to help youth transition from pediatric to adult cardiac services. This transition is known to be difficult for many young people, putting them at increased risk for hospital admissions or the need for urgent interventions.

Mentees were recruited from the SickKids Cardiac Transition Clinic, also in Toronto. A total of 162 young patients aged 14-18 years were eligible for the program. Among them, 132 individuals were approached, 19 consented to participate in the program, and 18 enrolled (nine females and nine males). Sixteen youths with an average age of 16.5 years completed the program. 

Younger patients (ages 14-15 years) were generally reluctant to participate because they were not yet thinking about the transition to adult care, Killackey noted. Also, patients with more severe disease were more likely to be interested in the program, with all but one participant classified as having “moderate” or “complex” disease. 

During the 15-week study, mentor-mentee pairs could speak on the telephone up to 10 times. The average number of calls was 7.25, and the average call length was 40.25 minutes. This high level of engagement, said Killackey, suggests that the mentorships fulfilled a real need among the mentees, even if the overall number interested in participating was low. In addition, semi-structured interviews revealed a high level of satisfaction with the program among the participants.

Results of the TRANSITION-Q, a validated psychometric scale that evaluates transition readiness and self-management capabilities, demonstrated an improvement in these outcomes among mentees from baseline to completion. 

Focus groups with healthcare workers involved in the program echoed the benefits identified by the youth but also identified concerns about the resources needed to run it. Killackey said that the cost could be partially alleviated through strategic partnerships, such as with patient advocacy groups. She is exploring such partnerships as she plans a larger, nationwide evaluation of the program.

‘Very, Very Useful’

Lily Lin, MD, pediatric cardiologist at the University of Alberta in Edmonton, told Medscape Medical News that many of her pediatric patients with CHD have challenges in navigating the transition from pediatric to adult services. Lin was not involved in the study but chaired the session in which it was presented.

Being able to ask mentors the questions that they may be too afraid to ask their health professionals “would be very, very useful in helping them through that transition period,” she said. “Mental health is a huge issue in some of our teenagers, and some of these issues might get better [with a] peer mentor.”

Resource allocation is a matter of prioritization, Lin said. Ideally, consideration for allocating resources to peer mentorship programs would be part of the initial planning and budgeting for pediatric clinics that specialize in chronic conditions. She also agreed with Killackey that creating strategic partnerships with patient advocacy groups is a good idea because those involved in such groups are highly motivated to support others along their journey.

The study was supported by the SickKids Labatt Family Heart Centre and the Canadian Institutes of Health Research. Killackey and Lin reported having no relevant financial relationships.