New program helps prepare teen organ recipients for transition to adult care

Adolescent transplant recipients are at increased risk of experiencing organ rejection. “When the child is unprepared to take control of care independently, this can make him or her more vulnerable to rejection,” according to Dawn Freiberger, lung transplant coordinator for the Boston Children’s Hospital Pediatric Transplant Center.

To better equip young adults for what comes next, Freiberger and her colleagues created an Adolescent Transplant Transition Clinic, modeled after other clinics they had studied. This is a partnership between Boston Children’s Pediatric Transplant Center and the Department of Adolescent Medicine that brings young people together with an interdisciplinary team of experts to explore health and lifestyle topics related to their age and interests and provide them with important information to help them manage their own care as they move toward adulthood. The clinic currently serves lung and liver transplant patients but hopes to add additional organ groups in the near future.

Improving health literacy leads to better outcomes

For parents and families at Boston Children’s, the clinic can address their concerns about how to help prepare their children for taking on additional responsibility for their care, helping to ensure a smooth transition to adulthood. Since improving patient health literacy and providing adolescents with opportunity for graduated autonomy can potentially improve medication and treatment adherence and long-term outcomes, this makes it a highly valuable offering for transplant recipients who meet the designated criteria, including being age 14 or older (or being a very mature preteen), being deemed medically appropriate by clinicians, being at least one-year post transplant, and demonstrating appropriate neurodevelopment to be able to handle the graduated independence the program offers.

The clinic is held periodically throughout the year, and participants are grouped with peers of similar age and maturity. Most patients who qualify will attend several times during their teen years.

Exploring the sessions

Each clinic includes up to three hours for individual appointments covering medical care and education tailored to the individual patient, which could include:

• administration of a validated transition tool by a social worker to assess independence and readiness for transitioning
• education provided by a transplant coordinator about the patient’s original medical diagnosis that led to the transplant and how the transplanted organ functions
• medication review and more in-depth education with a pharmacist
• discussion and counseling with an adolescent medicine clinician about age-appropriate health and lifestyle topics, including sexual health, peer pressure, and alcohol and drug use
• complete medical visit with an organ-specific medical provider if appropriate

The benefit of separate teen and parent group sessions

These appointments are followed by two concurrent group sessions, with one group geared for teens and the other group for their parents.

“Having the kids and parents in different groups has been very beneficial,” Freiberger says. “Social workers and psychologists run the groups and have set ideas of what they want to cover, but participants can also raise their own topics and take the discussion in the direction they find most useful,” she adds. For instance, at a recent session, the kids talked about how to handle peer pressure to drink at college, while parents talked about how to let young adults gain independence over their medication and treatment regimen, while still staying in close touch.

One step along the path to adulthood

Freiberger points out that the goal of the clinic is to give participants a deeper understanding of graduated levels of responsibility, so by the time they are ready to leave the pediatric program, they are prepared for what the future will bring.

Participation in the clinic does not mean transition to an adult program is imminent.

“Just because a patient comes to the transition clinic doesn’t mean he or she is ready to go to an adult center,” Freiberger stresses. She says that the transition clinic is one step on the path toward this destination. “Moving to an adult program can be several years away. This is just part of the process to get people ready when the time comes,” she says.

Learn more

To date, three clinics have been held and a total of 12 patients and families have attended. If you are interested in learning more about the clinic or want to find out if your teen is an appropriate participant for an upcoming session, talk with your providers in the Pediatric Transplant Center.