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Teen transplant recipients may struggle with adherence


Non-adherence to medication regimens among adolescent recipients of organ transplants may be more serious than previously understood, according to a study.

Researchers with Boston Children’s Hospital examined eight years of data from the Organ Procurement Transplant Network and found that as many as 9% of all pediatric and adolescent heart recipients (ages 18 and under) in the United States had an episode of non-adherence that compromised their health within two years of receiving their transplant.

Among patients who did not adhere to their medication, the risk of mortality was 26% within one year and 33% within two years, the researchers reported in a study published June 6 on the website of the Journal of Heart and Lung Transplantation.

“It is widely known that non-adherence is a particularly difficult problem among adolescent patients,” senior author Christopher Almond, MD, MPH, a cardiologist in the Heart Transplant Program at Boston Children’s, said in a news release. “But prior to this study, the scope and gravity of the problem wasn’t well-understood. Regionally, we knew what we were seeing, but this makes it markedly clear how many kids are dying nationally from a problem that is sadly so preventable.”

The researchers examined all 2,070 pediatric heart transplant cases between 1999 and 2007, including all reported incidents of non-adherence related to post-transplant death. Of the 186 children who were reported to be non-adherent, 48 died within a year of receiving their transplant and 61 died within two years.

“With all the advances that have been made in transplant medicine, non-adherence has become the leading cause of fatal graft rejection in adolescent patients, and it’s completely avoidable,” said lead author Melisa Oliva, PsyD, formerly a staff psychologist at Boston Children’s Pediatric Transplant Center.

“Teens may not understand the gravity of not adhering to their medications, including how they could lose their graft and affect their chances of receiving another transplant. We hope these data can help raise awareness of the seriousness of the problem and guide clinicians in identifying those most at risk, so interventions can be put into place early, before adherence issues develop.”

Also drawing from the OPTN data, the researchers identified several key risk factors associated with an increased risk of non-adherence in pediatric heart transplant patients. Groups most at risk included adolescents ages 12 to 17, patients on Medicaid, African Americans and those who had ventilator or ventricular assist device support at transplant.

The researchers are hopeful that the nation’s most at-risk patients may be identified and receive targeted interventions, such as extra counseling and support services, in an attempt to prevent future, potentially fatal, cases of non-adherence.

“For so many patients to receive a life-saving transplant — only to die from something this preventable — drives home the seriousness of this problem,” Almond said. “If the medical community can use these data to better identify and counsel at-risk patients as to what the real consequences of NA can be, we believe an important number of pediatric transplant deaths can be avoided going forward.”

Read the study abstract:


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