In celebration of the 25th Annual Update on Pediatric and Congenital Cardiovascular Disease, members of Children’s Hospital of Philadelphia’s Cardiac Family Advisory Council attended this year’s in-person conference, Cardiology 2022: The New Normal — Transformation in Pediatric and Congenital Heart Care. Here, they reflect on the conference topics most meaningful to them, including social determinants of health, the transition from pediatric to adult CHD care, and the many challenges and opportunities facing pediatric cardiac research.
Social Determinants of Health
Nicole: During a very powerful session on social determinants of health in childhood heart disease, Dr. Paul Stephens and panelists highlighted how “an outstretched arm for a healer can be a mountain climb for the receiver.” They spoke passionately about allocating resources for travel to help remove the last barrier for patients and their families as well as partnering with community services to provide resources that make receiving healthcare easier for families. One panelist said, "we can tell a family 'go get this med filled,' but we don't take into account how difficult it might be for a family to fill that prescription.”
Elise: Your zip code shouldn’t determine your health, and it was encouraging to hear work is being done in this area to help patients get access to the care they need.
Transitioning to Adult CHD Care
Beth: As a parent whose journey with CHD started 30 years ago, it was overwhelming to watch the panel, Adults Living With CHD. The panelists shared the importance of gratitude and taking ownership of their condition.
Elise: The speakers also discussed the importance of education; conversations with parents and providers regarding transition to an adult CHD provider need to start at a young age, and providers need to help children understand their health situation.
Nicole: It was so moving to hear Dr. Yuli Kim and adults living with CHD speak about the direct impact CHD has on their lives. Many spoke candidly about how their own transition of care from pediatric to adult CHD providers did not happen early enough. They stressed the importance of involving children in their care at an early age and beginning the transition process to an adult CHD program, such as the Philadelphia Adult Congenital Heart Center, in their early teens.
Research Challenges and Opportunities
Beth: Clinical research in the field of CHD was greatly impacted by the breadth of challenges related to the pandemic, including social distancing, supply chain issues, frozen funds, a reduced work force, and increased racial disparities. This is a sad reality, as research is needed to continue to move the field forward.
Elise: A fairly new opportunity of research is related to the impact of CHD on other organs in the body. Research has shown the brain, lungs, liver, bones, and placenta in fetal life can all be impacted by CHD. Every organ can be at risk and these issues start in fetal life. More research in this area is critical.
Nicole: It was truly incredible to see the research happening during the fetal stage to better understand the maternal-fetal environment. Studies look at the mother's medical history, health and behavior during pregnancy and environmental exposure and show direct and indirect effects on the growing fetus. It was shocking to see how elevated maternal distress is in pregnancies complicated by fetal CHD: 67% of women experience increased stress, 40% experience elevated anxiety and 20% experience increased depression. Real-time fetal MRI surveillance is being used in studies to capture the earliest, most subtle but common indicators of maternal-fetal risk for adverse outcomes and therapeutic interventions (prenatal and postnatal) are being harnessed to better support and safeguard maternal-infant health and wellness.