Adult Care Transition Program

Transitioning to Adult Care

Transition is a hot topic in the medical field, especially when working with teens. So why is that? And what does that even mean?

The teen years are a time of multiple transitions: from child to adult, learner to teacher, dependence to independence.  Without much thought, teens are learning the life skills necessary to “transition” to a functioning adult:

  • Housekeeping
  • Driving
  • Paying bills
  • Cooking meals

For teens with a chronic medical condition it is important that, in addition to these skills, they develop ownership and independence in their medical care. This includes:

  • Knowing their diagnosis and medical history so that they can articulate this information to future medical providers.
  • Learning their medications: name, dose, frequency, reason they are taking it, what symptoms to call the doctor for, and what number to call.
  • Practicing appointment scheduling, calling in refills and calling provider’s office with any symptoms or concerns.
  • Understanding the importance of a healthy lifestyle.
  • Maintaining lifelong medical care with the right kind of specialist.
  • Being knowledgeable about insurance coverage and career planning.
  • Understanding reproductive health, pregnancy and genetics related to their diagnosis.

Within the Adult Congenital Heart Disease program at Nationwide Children’s Hospital, we have a well-developed transition program for adolescents.  Transition education is provided to all patients who are at least 15 years old and have a congenital heart defect. This education can be provided by a one-on-one visit with a transition nurse, through written material (Transition Education Booklet), or both.

We know that about half of patients fall out of care after the age of 18 years for many reasons including feeling that they are “fixed” once they reach adulthood and don’t need further care.  Our main goal for the transition process is that no patient gets lost to care, and that they receive high- quality, specialized cardiology care throughout their life time from a cardiologist who is specially trained to understand their heart and the potential changes that can occur with advancing age.

Transition education is beneficial for parents, too. The state of Ohio defines an adult as age anyone over the age of 18. Therefore, the focus will shift from parents to the young adult for discussions, symptoms, medical decisions and signing consent for treatment for all medical care.  Permission must be obtained from the young adult to speak with the parent about their medical care. Insurance companies will need to obtain permission to talk with a parent, even if the parent is paying the bills.

And remember, there is a difference between transition education and transfer of care.  Transition education ideally should happen over several encounters to prepare the adolescent and family for transfer to the adult specialist.  Transfer of care is when the pediatric provider determines it is time to transfer to an adult specialist. Each provider will determine the age to transfer care; however, this most often occurs between 18-22 years of age. We encourage all families to discuss the transition process with their medical providers.

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Tracey Sisk
Tracey has been employed at Nationwide Children's Hospital since 1994 with extended experience in the cardiothoracic operating room. Working as both an RN circulator and RN First Assist, she has first hand knowledge of congenital heart defects, their vast variations and surgical repairs. She has been involved in research involving modification of the fontan procedure, temperature control elements within the operating room and the hybrid procedure for HLHS. She currently holds the position of nurse clinician on the adult congenital heart disease (ACHD)team. In this role, she coordinates the care of ACHD patients by arranging tests and referrals, providing discharge during clinic visits and discharge planning for hospitalized patients. In addition, she is actively involved in the Transition Program. This educational program prepares the adolescent for transition from pediatric to adult congenital heart provider.
Kathryn J. Junge, RN, BSN
Kathryn started her adult congenital heart disease experience in St. Louis, MO, at Barnes Jewish Hospital/Washington University School of Medicine, where she helped develop their program. She joined Nationwide Children's Hospital, in April 2013, as a nurse clinician on the adult congenital heart disease (ACHD)team. In this role, she coordinates the care of ACHD patients by arranging tests and referrals, providing discharge during clinic visits and discharge planning for hospitalized patients, and provides patient education.

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