Digital tool being used to support pediatric cardiac care.

A team of researchers led by TRANSFORM HF’s Dr. Sahr Wali are exploring how digital tools can support pediatric cardiac care and heart failure management.

“When you hear the word heart disease or heart failure, our mind often jumps to thinking of someone of older age. In reality, pediatric patients and their families are among the most resilient people navigating the healthcare system,” says Dr. Wali. “From obtaining a diagnosis at the stage of infancy to understanding the required lifestyle changes during adolescence, pediatric patients face a challenging journey to adulthood.”

Pediatric heart disease currently effects more than one million infants, children, and adolescents in the United States alone. These patients face a more uncertain care path compared to adult populations, with factors such as growth and maturation creating complexities. However, the increasing use of mobile phones among adolescents provides an interesting opportunity to help navigate these complexities while fostering self-management. Specifically, digital therapeutics have become increasingly used as an evidence-based tool to support heart disease management among adult patients, but limited evidence exists on its impact and value in the pediatric population.

“The younger ‘tech-savvy’ generation has continued to show their appetite for innovation as part of their everyday life. As researchers, clinicians, and caregivers, we are at a time where we need to work together to keep pace with the demand for innovative care solutions that simplify and incentivize care management,” says Dr. Wali.

This study explored clinicians’ views on the use of a digital therapeutic program to support pediatric cardiac care. Through semi-structured interviews with clinicians at SickKids, the team identified key themes to guide the development of a digital therapeutic intervention to empower adolescents with heart disease in their own care. These findings have been published in PLOS Digital Health.

Based on this study, Dr. Wali and the researchers continue to work collaboratively with patients, caregivers, and clinicians to build an accessible tool customizable to each patient’s changing care journey. With the collaborative support from the Hospital for Sick Children and Centre for Digital Therapeutics teams, an interactive prototype focused on goal-directed care management and strength-based wellness is currently underway.

“The period of adolescence already comes with its obstacles. The uncertainty of where to go or who to speak to is often the reason adolescent patients slip through the cracks as they shift from pediatric to adult care,” explains Dr. Wali. “By working with the teams on both sides of the street – SickKids and Toronto General Hospital – we hope to create a strength-based program that empowers care management and paves the way for teenagers to seamlessly transition into adult care.”