Coordinator smooths young transplant patients' transition to adult care

By Anne Harding

NEW YORK (Reuters Health) - Adolescent liver transplant recipients who work with a transition coordinator as they transfer from pediatric to adult care show excellent treatment adherence, according to a new pilot study.

The approach used in the study could be used to improve care for young people with other types of special medical needs, too, researchers say. They are already developing transition programs for kidney transplant patients and chronically ill pediatric patients in their endocrinology and GI services.

During this transition, adolescent transplant patients are at increased risk of medication non-adherence, Dr. Rachel Annunziato of Fordham University and the Icahn School of Medicine at Mount Sinai in New York City and her colleagues explain in The Journal of Pediatrics online September 3.

"The main thing that we see is teenagers kind of rebel against (taking their medicine), which can get worse when they transfer," Dr. Annunziato told Reuters Health. Failing to take immunosuppressant medication consistently can lead to organ rejection, and also boosts mortality risk.

"We thought that maybe what we needed to do was two-fold, that we should be preparing them better when they're in pediatrics, but also following them into the adult world so we could troubleshoot things as they happened that proved difficult to them," Dr. Annunziato said.

Transfer to adult care typically takes place around age 21, Dr. Annunziato and her team note, but "there is flexibility within our guidelines for transfer whereby it is delayed during periods of acute medical and psychiatric illness as well as insurance instability."

In the new study, Dr. Annunzio, a clinical psychologist specializing in pediatric psychology, met with patients when they were 19 or 20, and also at their routine outpatient visits, which take place every three to six months. She also participated in the last pediatric visit and the first visit on the adult service. Patients could correspond with her using whatever method they preferred, including telephone, text messaging, email, and social networking. Nurses, physicians or social workers specializing in adolescent medicine could also be trained to serve as transition coordinators, the researchers note.

To investigate whether this approach improved medication adherence, the investigators compared 20 transplant recipients who transferred from pediatric to adult care at Mount Sinai from 2007 to 2012, with the help of a transition coordinator, to 14 historical controls transferred between 1995 and 2005. Standard deviations (SD) of tacrolimus blood levels taken for the year before and the year after transfer were the primary outcome. Higher levels indicate less consistent medication use, and tacrolimus SD levels above 2.5 have been linked to worse outcomes.

For the transfer coordinator group, tacrolimis SD was 1.98 before transfer and 1.88 afterwards, indicating excellent treatment adherence. For the control group, the SD was 3.25 before transfer and 4.36 after transfer.

Before transfer, 25% of the transfer coordinator group had tacrolimus SD values above 2.5; after transfer, 20% of the group did. For the control group, the respective figures were 43% and 64%.

Four patients in the control group died after transfer, while none of the treatment coordinator group patients did, and none of the transition coordinator group were lost to follow-up.

The program continues to be part of standard care at Mount Sinai for transitioning liver transplant patients, and the hospital is working to adapt the program for young people with other types of chronic illness who are transitioning to adult care, Dr. Annunziato said. "It feels like it's a much smoother process and a much less scary one, for both patients and clinicians," she added.

"The short-term results (1 year) reported in this pilot study are impressive, showing much better adherence to medication in the group who had the benefit of a transition coordinator, compared with the historical control group," Dr. Lorraine Bell, the director of the pediatric renal transplant program and director of pediatric transition to adult care at Montreal Children's Hospital-McGill University Medical Center, told Reuters Health by email.

"This highlights the importance of coordinated comprehensive preparation for transition to adult care," said Dr. Bell, who did not take part in the new study. "However it still remains to be seen what will happen long-term, as the control group's serious complications (death) occurred beyond the first 2 years following transfer. It may be necessary to have ongoing support for young people with serious chronic illness beyond the first year."

"This struck me as a very innovative intervention," Dr. Emily Fredericks, chief of the section of pediatric psychology at the University of Michigan and C.S. Mott Children's Hospital in Ann Arbor, told Reuters Health. "The innovation is really in the simplicity in the study design and what they have been doing."

Dr. Fredericks' research focuses on improving health outcomes for pediatric transplant patients. "The adherence findings were really impressive," she added. But even more striking, she said, was the fact none of the patients were lost to follow-up.

Dr. Fredericks agreed that transition support programs can be very beneficial for pediatric patients with other types of chronic illness, for example type 1 diabetes, inflammatory bowel disease, and cystic fibrosis. Programs should address patients' health-related knowledge, self-management skills, and communication, and should also begin well before the actual transition takes place, she added.

SOURCE: http://bit.ly/1fl0CKQ

J Pediatr 2013.