Liver Transplant Program adds extra component of care
New service promotes keys to long-tern, healthy outcomes
Though medication adherence is critical to the long-term health of pediatric liver transplant patients, average rates of non-adherence can exceed 50 percent and account for nearly half of acute rejection episodes.
The Children’s Mercy Liver Transplant Program is no stranger to this problem, having performed more than 100 pediatric liver transplants over the past decade.
Children’s Mercy ranks among the best in the nation for both patient and graft survival. But transplant team members readily recognize that in the long run, life for pediatric liver transplant patients is about more than surviving, it’s about thriving.
To address the medication adherence and psychosocial issues faced by liver transplant patients and their families, the Liver Transplant Program at Children’s Mercy has developed the Psychosocial and Adherence Promotion Service.
“By adding this component of care to our program, we believe we are taking an important leadership role in transplant medicine locally, regionally and nationally,” said James “Jack” Daniel, MD, Director of the Liver Care Center and Section Chief for Hepatology and Transplantation.
Jamie Ryan, PhD, is the pediatric psychologist focused on identifying and addressing these issues. She has specialized training in treatment adherence and self-management, and oversees this innovative program, which has integrated psychosocial/adherence services into routine post-transplant clinic visits.
“The Children’s Mercy Liver Transplant Clinic didn’t have an integrated program before I joined the team,” Dr. Ryan said. “Like most pediatric liver transplant programs, a referral to psychology was made once the team detected that a psychosocial issue was likely impacting a patient’s liver care.”
As part of her position, Dr. Ryan is taking a preventive approach to facilitating patient adherence. “A psychosocial assessment is done with every liver transplant patient to identify potential risk factors, screen for subclinical difficulties that may impact disease management, and help inform the selection of adherence strategies based on reported treatment barriers,” Dr. Ryan said.
“By integrating these services into the liver clinic, it may help de-stigmatize psychology and encourage patients and their families to openly discuss how they are managing the post-transplant treatment regimen, as well as their family’s health and well-being.
“Many times, a patient’s medical issues are well managed, and the family doesn’t appear to have any glaring adherence problems. Yet, even inconsistent dosing and subclinical symptoms of depression increase the risk for nonadherence and adverse health outcomes. With psychosocial screening and adherence promotion strategies integrated into routine liver care, we have the opportunity to reach more families, be proactive in addressing concerns, and monitor changes in adherence barriers over time,” she said.
Dr. Daniel agreed and added, “In some families, problems with medication adherence don’t occur until the child reaches adolescence. When we see adherence issues, we often find they stem from multiple problems in the child’s life.”
For families experiencing problems following the treatment regimen, Dr. Ryan is also able to provide targeted interventions at the point of care. “This is a great opportunity to capitalize on their motivation and engage families during the clinic visit, and they don’t have to worry about working another appointment into their busy schedule. If we feel a problem can be addressed while they are here, we try our best to do so.” And if a family has greater psychosocial needs requiring more frequent follow-up in an outpatient setting, Dr. Ryan works with them to initiate the referral process.
Adherence barriers that are commonly addressed in clinic include:
- Forgetting to take their medicine
- Not planning for or bringing medicine when they leave home
- Poor organization
- Difficulty understanding when/how (e.g., with or without food) to take the medicine
- Not refilling a prescription before the medication runs out
- Difficulty swallowing pills
- Other psychosocial issues, such as oppositional behavior, adolescent treatment responsibility and family communication
As Dr. Ryan and the Children’s Mercy Liver Transplant Team continue to develop the Psychosocial and Adherence Promotion Service, they look for ways to improve each patient’s care and long-term quality of life.
“Our team is constantly asking, ‘What can we do to improve patient care? How can we effectively facilitate and monitor adherence?’” she said.
Text messaging, electronic pill bottles and medication reminder apps all have the potential to improve adherence. “There’s little research on the clinical utility and costs associated with routine monitoring of medication adherence and preventative interventions. These are areas we would like to explore further,” Dr. Ryan said.
In the meantime, Dr. Ryan is dedicated to the integration of psychosocial screening measures, such as the Pediatric Quality of Life Inventory™ Transplant Module, into routine clinical practice and the implementation of practical, evidence-based strategies to enhance patient adherence.
“With Dr. Ryan now a part of the team, we believe we can prevent problems before they reach a critical stage,” Dr. Daniel said. “We want to do everything we can to help our transplant recipients live long, active, healthy lives.”
Learn more about the Pediatric Liver Transplant Program at Children's Mercy