Failure to follow medication routines is a fatal mistake for too many teenage heart transplant patients

It’s no secret that when it comes to making safe health choices many teenagers don’t have the best track record. But according to a study from Boston Children’s Hospital, this is especially true—and dangerous—among adolescents who have had a heart transplant.

After receiving an organ transplant, patients must follow a strict medication routine to keep themselves healthy. Failure to do so, known as non-adherence (NA), can result in life-threatening illness. While doctors have long known that adherence is a problem among adolescent patients, just how serious the problem was on a national level wasn’t clear until recently, when a team from Boston Children’s researched NA among all adolescents who received a heart transplant over an eight-year period.

Unfortunately, the numbers they uncovered were fairly shocking.

“Everyone in the medical community knows non-adherence is a problem for many adolescent patients, but before this study, I don’t think we truly understood just how serious an issue it is,” says senior author Christopher Almond, MD, MPH, a cardiologist in the Heart Transplant Program at Boston Children’s. “Seeing the data on a national scale makes it very clear how many kids are dying, because they aren’t following their medication routines. The worst part is, these deaths are entirely preventable.” 

Along with nurse practitioner Heather Bastardi, MSN, RN, NP from Boston Children’s Heart Transplant Program, Almond and his team studied all 2,070 pediatric heart transplant cases between 1999 and 2007 looking for cases of NA, especially when it was linked to death. They discovered that almost 9 percent of all pediatric and adolescent heart recipients in the U.S. had an episode of NA within two years of getting their new heart, many of which proved fatal. Of the 186 cases of NA they researched, 48 had died within a year of receiving their transplant and 61 had died within two years.

“Almost all teenagers, not just those who have received a transplant, have a very difficult time understanding how their actions can affect their health later on,” Bastardi says. “But for patents who need to take immunosuppressants to stay healthy, the consequences of not making that connection becomes very serious, very quickly.”

Boston Children’s takes many steps to empower and educate its adolescent transplant patients about how to best manage their own health after transplant, often starting when the child is around 10 years old.

“We want to give our patients plenty of time to become comfortable with the notion that one day they will be totally in charge of their own health,” says Bastardi. “We gradually give them more responsibility and independence, while still involving mom and dad to make sure everything goes according to plan. This way, when it is time for them to be in charge, they’re prepared.”

To help adolescent transplant recipients take control of their own health management, a team of Boston Children’s doctors, nurses, pharmacists and social workers come together, along with the patient and his family at the center, and devise a customized care plan to ensure the transition to adulthood is a easy as possible for everyone involved. Some methods they use include:

  • hosting open and honest conversations with patients and parents, clearly explaining what each medication does and why they’re important for optimal health
  • provide instruction on how to turn cell phones into medication reminders
  • one-on-one support for patients, with or without parental involvement, to address any fears or obstacles to adherence
  • staged interventions with counseling professionals if needed
  • offering events specifically for teenage patients to encourage communication among peers and reduce feelings of isolation
  • providing the teenager with direct contact to members of their care team in the event that they have an urgent, but private question
  • using hands-on models and activities like computer games, websites and questionnaires to educate and gauge the patients’ level of independence
  • help selecting the right adult transplant center when the time comes

“At the end of the day, we want our patients to have a real understanding of why they take medication, which needs to go beyond, ‘because my parents and doctors tell me to,'” says Bastardi. “When a younger patient truly understands the cause and effect relationship between adherence and life-long health, they’re less likely to face a serious NA problem down the line.”

To learn more about Boston Children’s pediatric Transplant Center, or speak with one of our experts, please visit their website.