Transition of Care

Each patient transitioning from a child neurologist to an adult neurologist will have unique experiences and needs. CNF’s Transition of Care Program—its largest and most diverse program—helps to support youth, families, and child neurology teams in the medical transition from pediatric to adult health care systems.

Child neurologist and TPAC Chair Dr. Ann Tilton welcomes you to the Transitions of Care website: “The Child Neurology Foundation is working to make each transition successful by giving patients, caregivers, doctors, and other stakeholders the information and support they need.”

What is Transition of Care and what is CNF doing to help your family?

Transition of Care Video Series

Transitions is a lifespan issue. With this video series, CNF shows the journeys of 2 patients and families as they approach transition in their teenage years. The series showcases perspectives and experiences of national transitions experts–child and adult providers who care for individuals with neurologic conditions–through in-depth interviews. The series underscores the importance of partnership, communication, and a defined process to ensure successful transition of care.

Patient & Family Journeys: Kobe. Kobe is an 18-year-old young man who lives with epilepsy. This is Kobe’s story of preparing to transition from a child to adult neurologist, with insights from Kobe’s mother, his child neurologist, and Kobe, himself. Kobe relays his message to other children and young adults who are going through the same journey.

Patient & Family Journeys: Katie. Katie is a 23-year-old young woman who lives with cerebral palsy, epilepsy, and other health issues. This is Katie’s story–one of hope and inspiration–as told by her mother, of Katie’s journey transitioning from a child to adult neurologist, with eyes towards Katie’s future.

What is TPAC?

The Transitions Project Advisory Committee is a multi-stakeholder group of adult neurology providers, pediatric neurology providers, social workers and therapists, advocates, and caregivers who lead CNF’s projects in Transitions of Care. For more information on TPAC or if you are interested in supporting these efforts, please contact Jessica Nickrand 

The TPAC was initially charged with developing strategies for dissemination of the consensus statement and projects reflecting the 8 Common Principles identified in the statement. In collaboration with clinicians, patients, families, and advocacy organizations, TPAC works to cultivating necessary changes in practice, policy, and the neurology community culture for successful transition to occur. TPAC believes it is only through true collaborative partnerships—with precise intent—that such meaningful change is possible in the neurology community. 

Below you will find videos of TPAC members explaining the challenges of transitions of care for our community and why it is so important for CNF to meet those challenges. 

Child neurologist and TPAC Chair, Ann Tilton, discusses:
“How do you describe transition?”
“Why is transition challenging for patients?”
“What do you tell adult neurologists who are hesitant to accept your patients?”
“Why is transition important to both child and adult neurologists?”
“Why is transition of care one of the CNF’s top advocacy priorities?”
“Why did CNF develop a consensus statement on transition?”

Child neurologist Lawrence Brown discusses:
“Why do certain neurologic conditions pose challenges for transition?”
“How does transition to adult care offer a new perspective on medical care for the patient?
“Why is transition of care one of the CNF’s top advocacy priorities?”

Adult neurologist, Cynthia Comella, discusses:
“As an adult neurologist, what’s your role in making transition successful?”
“Why are some adult neurologists hesitant to receive young adults living with neurologic conditions from childhood?”
“How do you prepare for patients who are transitioning?”
“What are your thoughts on transition of care as one of the CNF’s top advocacy priorities?”

Nurse, Rebecca Schultz, and social worker, Symme Trachtenberg, discuss:
“Why is transition such an important time for adolescents?”
“What concerns do families typically express?”
“What advice do you give to parents?”
“What types of support does the CNF offer for transition?”

Resources for Young People with Neurologic Conditions and their Caregivers 

The 8 Common Principles of Transition of Care are: 

  • Expectation of Transition
  • Yearly Self-Management Assessment 
  • Annual Discussion of Medical Condition and Age-Appropriate Concerns 
  • Evaluation of Legal Competency 
  • Annual Review of Transition Plan of Care 
  • Child Neurology Team Responsibilities 
  • Identification of Adult Provider 
  • Transfer Complete 

Click below to find out more about these steps and to find downloadable tools for you and your provider to use in practice to help guide your transition. 

…and matches to downloadable tools to be used in practice. Click on the graphic below to get started.

(2) Information from the Interactive Graphic, plus the forms and tools can be downloaded as a single PDF file.

(3) Each tool is available individually in English:

  1. Transition Package Cover Page
  2. Transitions Checklist
  3. Self-Care Assessment (Parents/Caregivers)
  4. Self-Care Assessment (Youth/Young Adults)
  5. Plan of Care
  6. Medical Summary

(4) En español:

  1. Paquete de las Transiciones
  2. Lista de Control de las Transiciones
  3. Evaluación del Cuidado Personal Padres/Cuidadores
  4. Evaluación del Cuidado Personal Menores/Adultos Jóvenes
  5. Plan de Cuidado
  6. Resumen Médico

We are grateful to have many partners in this project. Below are resources developed by our external partners to empower young adults and their caregivers during their transitions of care. 

Resources for Providers

Reimbursement for Transition 

Got Transition and the American Academy of Pediatrics released a new 2020 Transition Coding and Reimbursement Tip Sheet to support the delivery of recommended transition services in pediatric and adult primary and specialty care settings. The new tip sheet includes a list of updated transition-related CPT codes, including the new code for transition readiness assessment, and current Medicare fees and RVUs for these services. It also includes a new set of eight clinical vignettes with recommended CPT and ICD-10 codes.  

Got Transition’s Six Core Elements of Transition 

The 8 Common Principles of Transition of Care are: 

  • Expectation of Transition 
  • Yearly Self-Management Assessment 
  • Annual Discussion of Medical Condition and Age-Appropriate Concerns 
  • Evaluation of Legal Competency 
  • Annual Review of Transition Plan of Care 
  • Child Neurology Team Responsibilities 
  • Identification of Adult Provider 
  • Transfer Complete 

Click below to find out more about these steps and to find downloadable tools for you and your patients to guide your conversations about their transition of care. 

(2) Information from the Interactive Graphic, plus the forms and tools can be downloaded as a single PDF file.

(3) Each tool is available individually in English:

  1. Transition Package Cover Page
  2. Transitions Checklist
  3. Self-Care Assessment (Parents/Caregivers)
  4. Self-Care Assessment (Youth/Young Adults)
  5. Plan of Care
  6. Medical Summary

(4) En español:

  1. Paquete de las Transiciones
  2. Lista de Control de las Transiciones
  3. Evaluación del Cuidado Personal Padres/Cuidadores
  4. Evaluación del Cuidado Personal Menores/Adultos Jóvenes
  5. Plan de Cuidado
  6. Resumen Médico

This work would be impossible without the generous support of CNF’s 2020 Partners in Transitions of Care: Eisai Inc., Genentech, Greenwich Biosciences, Horizon Therapeutics, Medscape Education, Novartis, Retrophin Inc., and Ultragenyx.