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.

Below you will find resources for providers and families: videos with perspectives about transition from families, youth, and national neurology experts; downloadable forms including self-assessments, plans of care, medical summaries, transfer letter samples; comic books; published consensus statement; coding information; and resources from external partners [in-progress].   

CNF President, 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.”

2017 Transition of Care Video Series

Transitions is a lifespan issue. With this new video series, CNF shows the journeys of 2 patients and families as they approach transition. 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.

Conversations with Transitions Project Advisory Committee (TPAC) Members

Child neurologist and TPAC Chairperson, 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?”

Child neurologist and CNF President, 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?”

Consensus Statement

Providers of neurologic care should start transition discussions early and guide their patients’ transition planning processes. In 2016, CNF took a critical first step in creating an implementable framework for child neurology teams to do just that. Led by CNF, the consensus statement, The Neurologist’s Role in Supporting Transition to Adult Health Care was published in July 2016 and endorsed by the American Academy of Neurology, American Epilepsy Society,  Child Neurology Society and American Academy of Pediatrics. The consensus statement was created by an independent panel of 14 interdisciplinary experts based on a review of research literature.

The statement identifies 8 Common Principles for the neurology team to adapt and employ–supporting the medical transition of youth with neurologic conditions. It includes vignettes intended to illustrate how the Principles that define the child neurologist’s role in a successful transition process can be put into practice across the child neurology diagnosis spectrum for: Generalized Epilepsy, Muscular Dystrophy, Fragile X, Tuberous Sclerosis Complex, and ADHD.

These 8 Common Principles serve as the framework on which all CNF Transitions of Care projects and initiatives are developed.

Tools for Transitioning Young Adults with Neurologic Conditions

To move policy into practice – ideally resulting in successful transitions – the CNF Transition Project Advisory Committee* developed tools** to help practices implement the 8 Common Principles outlined in the consensus statement. This information is available in a variety of ways:

(1) An Interactive Graphic outlines each of the 8 Common Principles

  • 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

…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:

  1. Transitions Policy
  2. Checklist
  3. Self-Care Assessment (Parents)
  4. Self-Care Assessment (Youth)
  5. Transition Package Cover Page
    1. Transfer Letter Sample
    2. Plan of Care
    3. Medical Summary

~~ Although developed for providers, these tools can empower patients and families to start the transitions conversation with providers ~~

*CNF acknowledges the work of the Transitions Project Advisory Committee (TPAC) to develop these tools. TPAC is supported by Eisai, Inc. , Novartis Pharmaceuticals, Ipsen Biopharmaceuticals, and Upsher-Smith Laboratories.

** Several tools were customized from Got Transition’s Six Core Elements of Health Care Transition and were developed by the CNF, at the request of the AAN, as part of a national initiative, led by the American College of Physicians.

Transitions Project Advisory Committee (TPAC)

Support for the medical transition of youth living with neurological conditions is a critical acknowledgment that youth should not simply survive to adulthood… they should thrive as adults!

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.

Comic Book: “Understanding Transitional Care in Epilepsy”

The 6th comic book in the “Medikidz Explain Epilepsy” series, this educational comic book focuses on the transition process from pediatric to adult health care for patients living with epilepsy, and has been endorsed by the Child Neurology Foundation and the Epilepsy Foundation. “Understanding Transitional Care in Epilepsy” features two young adults, Brian and Julia, who share their experiences with the transition from pediatric to adult epilepsy care. CNF partnered with Eisai, a member of the Corporate Advisory Board to develop this comic book, under the leadership of Dr. Brown, TPAC Chairperson. Request your free copy:

Transition Coding and Reimbursement Tip Sheet

Got Transition and the American Academy of Pediatrics released a new 2017 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 seven clinical vignettes with recommended CPT and ICD-10 codes. Find other resources at: