by Jill Macfarlane, CCLS and Pamela Grant, LCSW
Transplant Child Life Specialist Transplant Social Worker
The pediatric kidney transplant team at Primary Children’s follows close to 100 transplant patients. Our team consists of four pediatric nephrologists, a transplant coordinator, a transplant social worker, a pharmacist, a pediatric renal dietician, and a transplant child life specialist. We work exclusively with the kidney population and are lucky to provide care to patients in both the pre and post transplant phases. Our program has been transplanting kidneys in children for 30 years - both at the University Hospital and at Primary Children’s Medical Center. Over the years, we have noticed the need for an effective way to transition adolescent patients to adult care.
Pediatric transplant centers throughout the country are working on this very real challenge. We know that teenagers, more than any other age group, are more likely to lose their transplanted kidneys. These losses often happen within a few years of being transferred to an adult physician. Many pediatric patients simply need extra help while transitioning the responsibilities of their illness from their parents to themselves. Parents also struggle with how to help their child with this critical part of growing up. Together, we need to work to prepare young people to take on the care of their transplants. It is important to start early. As a result, our team has developed the Movin’ On Up Adolescent Transition Program.
As the first step, we ask the children to fill out a basic health information page alone while they are in the waiting room. This includes information on their disease, transplant medications, and recent symptoms, or concerns. By filling out the form themselves, they have the opportunity to think about their own healthcare needs.
Additionally, patients age 16 and up, begin their clinic visit without their parent present in the clinic room. In this way, they will learn how to give information and talk without relying on their parent to speak for them. We then invite the parent in during the clinic discharge, so they can raise any additional questions and concerns.
We also provide the patient with a list of goals that we expect them to pass off over a period of several years. These goals focus on healthcare education, life goals, healthy lifestyle choices, and school and career development. Our primary objective is to help our patients learn how to take care of their transplant within the context of everyday life.
We implemented this program at Primary Children’s two years ago, in May 2010. Since that time, we have had several patients graduate the program and move on to adult transplant care. In a self report survey with the graduating patients, all patients are identifying the program as beneficial to both the patient and parent.
As a next step, we are beginning to partner with adult programs across the valley. Our hope is to create awareness for the need of adequate adolescent transition. For more information on the Kidney Transition Program at Primary Children’s please contact Jill MacFarlane at 801-587-7720.
