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Care of the Adolescent with Congenital Heart Disease – It Takes a Village AND a Map to Find it

June 29, 2023

As children with congenital heart disease (CHD) survive longer into adolescence and adulthood, the population of these patients with medical complexity who may need multidisciplinary care is only growing. This month, Pediatrics in Review published an article by Paul et al entitled, Care of the Adolescent with Congenital Heart Disease: Beyond the Lesion, and elegantly explored the many facets of care needed to help these patients truly live their longest and best lives.

The importance of mental healthcare has been recognized across the globe, and adolescents with CHD are a high-risk population. In addition to the known long-term neurodevelopmental impact of complex CHD, these patients experience the psychological impact of multiple hospitalizations, the burden of medications, the trauma of frequent laboratory blood draws, the multiple activity limitations/restrictions, and ever-changing family interactions, including with their siblings. Also, inadequate mental healthcare support sets them up for difficulties with medication adherence, hence worsening the burden of symptoms as well as hospitalizations in a vicious cycle. Mental healthcare support is also an area of immense potential for partnerships with general pediatricians for these children. Having multiple sets of eyes aware of the risk of mental health problems and shared screening practices can help with identification and early intervention and also convey the message of a unified medical team—the whole team cares about the child’s mental health, not just the heart doctor, and not just the pediatrician.

The preparation to transition to an adult healthcare system cannot be emphasized enough—and it is perhaps never too early to prepare children for it. Starting early with simple things like having them describe their heart disease or list their medications as they enter the pre-teen and teen years can empower CHD patients to be their own best advocate, a vital skill not just as they prepare to leave their homes for higher education or work but also as they navigate through adult hospitals in the future, where they receive less intensive support and monitoring than we provide them on the pediatric side. The challenges of transition are compounded in patients who have developmental delays or technology-dependence, whose parents remain the primary champions for their healthcare and appointments. As this population grows and we aim to bolster our infrastructure to care for them, it is vital to maintain a patient-centered approach to their care, mapping their journeys through our health systems and finding them the optimal medical home.

Consider a 14-year-old young lady with a history of hypoplastic left heart syndrome, a fenestrated Fontan circulation, with a stent in the fenestration, and a baseline estimated glomerular filtration rate of 62 ml/min/1.73 m2. This is not an uncommon scenario in a CHD clinic. This child needs follow-up care with their cardiologist, neurodevelopmental specialist, a hematologist, a nephrologist, and likely a hepatologist in the coming years, in addition to health care maintenance and anticipatory guidance from their pediatrician and potentially a consultation with pediatric gynecology about birth control options (depending on the comfort level of the pediatrician in prescribing these). Decisions for medications by each specialty will impact the other. Siloed decision-making and leaving the patient to navigate the phone lines and multiple appointments and lab draws on different dates among the specialists is less than ideal. After spending most of our training specializing more and more, our patients need us to be more ‘general’ doctor or to figure out a system for us to work seamlessly together to come up with patient care plans. Multidisciplinary clinics have been devised for problems such as muscular dystrophy, spina bifida, and aerodigestive issues—perhaps children with CHD may benefit from the same? As we are learning, not only does it take a village to help these patients thrive, that village may not be completely settled or mapped yet. This is our call to action, partnering with these young adults and their families, to equip them with the GPS to route them to their optimal outcomes.

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