The Center for Liver Disease and Transplantation at NYP/Columbia has created a new program to help pediatric liver transplant patients transition to adult care.
“Advances in both surgical and medical management have led to the rising success of pediatric liver transplantation over the last several decades, and with pediatric patients successfully reaching adulthood, we have begun to shift our focus to long-term outcomes,” says Jennifer Vittorio, MD, director of the PLATINUM (Pediatric Liver to Adult Transition) program. “Our data has demonstrated higher rates of rejection, loss of organs and mortality rates up to 30%, following transfer to adult providers. We started PLATINUM to provide adolescents and young adults with stronger follow-up and prevent them from losing ground.”
The PLATINUM program has assembled a multidisciplinary care team including transplant specialists, a family nurse practitioner, transplant pharmacologists, social workers and mental health professionals, providing the most comprehensive care available to young people dealing with chronic illness after liver transplant.
“Research has shown that the transition process should begin early,” says Dr. Vittorio. “We now offer special support for all transplant patients aged 16 to 26 in our monthly transition clinic. Our dedicated transition clinic provides annual follow-ups, labs, medication changes, and any necessary procedures, guaranteeing a much-needed continuity of care.”
This type of transition model has already proven effective in Europe.
At Columbia, the PLATINUM team has developed transition readiness assessment tools, a quality of life inventory, and a special database tracking the progress of nearly100 patients. “We’ve achieved over 70% compliance,” says Dr. Vittorio, “since we opened the clinic in February 2017.”
In addition, the team is exploring telemedicine to reach young liver transplant patients outside the tri-state area. “Some come from as far away as Rochester, New York or Northern Vermont,” says Dr. Vittorio. “We hope to develop a new model of patient education with conference calls that focus on medication adherence, healthy behavior and self-management skills.”
How the program works
The PLATINUM team meets monthly to review each patient’s progress. Parents are encouraged to participate, yet the team also meets separately with teens and young adults to discuss confidential matters, like sexual behavior or need for additional psychosocial support.
“Our goal is to help young people shift from depending on their parents to dealing with medical and insurance issues on their own,” says Dr. Vittorio. Topics covered include an overview of underlying medical illness, treatment plans and medications adherence, self-management strategies, questions about reproduction, drug and alcohol use, school and career planning, and how best to provide ongoing guidance.
“Young people often think of themselves as invincible and one of the big things they need to understand,” says Dr. Vittorio, “is the consequence of high-risk behavior involving the use of alcohol and drugs, and how much they can lose by not adhering to their medical routines. We teach patients to call for their own follow-up appointments and reach out to their care team if they have a special concern. We set goals at each visit, from finding a good local primary care provider to refilling medications and communicating with the transplant team.”
Special sessions are held to answer questions about reproduction and help young patients deal with the challenges of going off to college and living independently.
Since young liver transplant patients may also suffer from PTSD and depression—things that aren’t always addressed during regular follow-up appointments—we make sure they have access to a therapist,” adds Dr. Vittorio.
Appointments at the PLATINUM Clinic are longer and more thorough than most patient visits, extending to an hour and a half.