Keeping Rhythm: How Congenital Heart Patients Can Move from Pediatric to Adult Care
Sep 26, 2023 Nicole Levine
Early adulthood is marked by coming-of-age moments: graduating from high school and perhaps starting college. Moving into a dorm room or apartment. Setting life goals and choosing career paths.
For those in early adulthood who were born with congenital heart defects, another necessary rite of passage is transitioning from pediatric to adult care.
“We love to see our patients emerging as independent adults who feel confident making decisions about their care,” said Rose Tompkins, MD, associate director of the Adult Congenital Heart Program at the Smidt Heart Institute. “We want to start empowering patients early in their care. Sometimes, our patients have gaps in their care between aging out of pediatrics and choosing a provider who can best serve their needs through adulthood.”
Smoothly bridging that gap is important, Tompkins said. Actively managing health is crucial to those living with a congenital heart defect.
Smidt Heart Institute experts offer these tips for making that transition in care without missing a beat.
Old Enough to Drive a Car? Old Enough to Drive Care
Congenital heart conditions are sometimes diagnosed before birth, so it’s natural and necessary for a patient’s parents to manage their care and make important decisions for them. As a patient reaches their teenage years, it’s a good time to start handing them some of the responsibility for managing their cardiology care. Let them take on scheduling appointments, picking up prescriptions when they can legally do so and accessing electronic medical records.
“Tools like CS-Link are incredibly empowering,” said Ruchira Garg, MD, director of Congenital Noninvasive Cardiology and associate director of the Guerin Family Congenital Heart Program. “They let patients communicate directly with their providers and ask questions. Starting to hand off these tasks from parents to patients gradually over time makes it much less overwhelming for young people.”
Stepping Up and Stepping Out
As young patients begin to take over some of the responsibilities of their medical care, it’s also an important time for parents to excuse themselves for a portion of an appointment. Concerns related to sex, smoking and substances are important for patients and physicians to address candidly and directly—and that communication can be uncomfortable in front of parents.
Parents remain important advocates for supporting their children in being heard by their doctors.
“Sometimes you get a provider who just cannot help talking to the parents by default instead of the patient,” Garg said. “You can help by prompting them to speak up, asking them what they think or asking them directly to give the answer to the patient.”
Passing of the Binder
Many families keep careful records of every surgery, procedure and medication involved in a patient’s care. Understanding that history is important, and many of those steps may have been taken before a patient was old enough to truly grasp their purpose and importance, Garg said.
“You can have a ritual of sharing everything that’s been amassed and compiled over the years,” she said. “Take time to review it together.”
Learning about a specific condition and its long-term implications is a key part of treatment—and since most patients see the doctor caring for their congenital heart condition only once a year, time is limited. Having a strong understanding will help the patient move forward and know which questions to ask.
"We love to see our patients emerging as independent adults who feel confident making decisions about their care."
Early Awareness of Reproductive Planning
For many women with congenital heart defects, pregnancy carries higher risks. That’s one of the reasons accredited adult congenital heart programs have access to specialists in reproductive health.
Decisions that many people put off until their 30s or later should be considered earlier for those with these heart conditions, Tompkins said. Unfortunately, gaps in care often coincide with times when these significant issues should be considered.
“Empower yourself with knowledge of your needs, risks and what all of your options are if you think you’d might like to have children one day,” Tompkins said. “We don’t want anyone to make assumptions and then learn in their 30s that their risks are much higher than they ever imagined.”
In addition to discussions of possibilities surrounding pregnancy, birth control is frequently imperative to prevent an unwanted or high-risk pregnancy. It’s essential to discuss with your doctor which type of birth control to use because some forms have higher risks than others for congenital heart patients.
“Pregnancy is a serious matter for everyone,” she said. “It has an even greater implication for personal health and longevity, in addition to mental health and future life plans.”
A Medical Home
One of the benefits of Cedars-Sinai’s congenital heart program is that pediatric and adult specialists work side by side.
“Adult medicine is handled very differently from pediatric medicine,” Garg said. “It can be a complete shock to the system. But, in our program, patients are still coming to the same medical home. They will experience changes, but they know I am a couple of doors down and their adult congenital heart providers are still talking with me.”
Discussing these transitions well before they occur and getting recommendations from providers will help with continuity of care.