For teens living with congenital heart disease (CHD), navigating life changes with a complex medical condition can be daunting, but a new study has found that providing virtual peer mentorship programs can help teens transition out of pediatric care.
The findings were published in a new study led by Tieghan Killackey, an Assistant Professor at the Lawrence Bloomberg Faculty of Nursing. They examined the impact of the iPeer2Peer mentorship model in a group of 18 mentees between the ages of 14-18 and seven mentors all of whom are living with congenital heart disease, and who were transitioning into adult care.
One of the primary outcomes showed improvements in the mentees transition readiness measure – a scale that assesses a teen’s ability to self-manage their own care including symptom management, booking appointments, and discussing their care with specialists.
“One of the reasons for focusing on this population and offering a transition care model that includes mentorship was because we heard from both patients and clinic nurses that there was a need for this unique support during the transition to adult care,” says Killackey who also holds the RBC Chair in Cardiovascular Nursing Research at University Health Network’s Peter Munk Cardiac Centre.
Not only is the transition challenging for many of these young people, but there can be long wait times before they are seen by their new care team, and these delays in care can lead to cardiac complications or other negative health outcomes.
Using the iPeer2Peer model, which was previously developed by Drs. Jennifer Stinson and Sara Ahola Kohut at The Hospital for Sick Children (SickKids), Killackey and her team trained mentors and then matched them with mentees according to various characteristics such as their disease severity, hobbies and interests, or experiences with certain life events including going away to university or starting a job for the first time. Once matched, the mentors and mentees participated in one phone call per week over the course of 10-15 weeks using the Google Meets platform. The calls were monitored by the research team to understand what topics resonated with mentees and enabled researchers to provide support to mentors as needed.
“One of our most surprising findings was the length of time the mentees and mentors spent on these phone calls,” says Killackey. “They averaged about 40 minutes, which for teens is a significant amount of time to spend on a call. It showed us that there was a need for this connection as most of the mentors and mentees had never met anyone else with congenital heart disease before.”
Congenital heart disease accounts for around 1% of all live births in Canada but with rapid advances in care over the past few decades, a greater number of children born with congenital heart disease are growing into adulthood making the support for transitions in adult care more pressing.
This program was tested alongside the newly established Cardiac Transition Clinic between SickKids and Toronto General Hospital, and the clinic staff collaborated as members of the research team. “The cardiac clinic nurses were really key partners in the success of the mentorship program,” adds Killackey. “Not only did they identify interested mentees and mentors, but they were able to suggest the best mentor paring for each mentee because they know their patients so well, from both a medical and psychosocial perspective.”
Other notable findings from the study showed that while the iPeer2Peer program was offered to teens between the ages of 14-18, the median age for those interested in mentorship was about 16.5, and the program was of most interest to mentees who had more moderate or complex forms of CHD, who may experience more symptoms and require higher levels of self-management.
Killackey says that these findings suggest older teens and those with more severe forms of CHD may be more focused on their transition out of pediatric care, and future iterations of the mentorship program should be tailored to that age group.
“Being able to speak with someone slightly older who had experienced this transition was something the study participants shared as being very valuable, and was a clear opportunity to help bridge the gap,” says Killackey.
Building on the outcome of this study, Killackey and colleagues will now examine ways to improve the transition to care specifically for those with moderate or complex forms of CHD by evaluating the iPeer2Peer mentorship program with a group of older mentees ranging in age from 16-25, who will be matched with older mentors in a larger multi-site study funded by the Heart and Stroke Foundation and the Canadian Institutes of Health Research.
In partnership with the Canadian Congenital Heart Alliance, Killackey says her ultimate goal would be to see the iPeer2Peer mentorship program run as an ongoing standalone program that would continue to support patients during their transition to adult care.