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.

Join us at the Child Neurology Society Annual Meeting on October 18, 1-4:30 pm in Chicago for this year’s CNF Symposium! 

Plated Lunch will be Served at 12:30pm, session will start promptly at 1pm.

Not Your Typical Transitions Symposium: How to Integrate Transition into Your Practice and Successfully Transfer Your Patients to Adult Providers

Welcome & Transitions Project Advisory Committee (TPAC) Wants to Hear Your Voice
Lawrence Brown, MD; Children’s Hospital of Philadelphia, Philadelphia, PA

Transitions: What are Neurologists Telling Us?
Claudio Melo de Gusmao, MD; Boston Children’s Hospital, Boston, MA

Transitions: What are Families/Caregivers Telling Us?
Christina SanInocencio, MS; Executive Director, LGS Foundation, Bohemia, NY

Getting Down to Business: How Do We Actually “Do” Transitions
Ann Tilton, MD; President, Child Neurology Foundation / Louisiana Health Science Center, New Orleans, LA
Bruce Cohen, MD; Akron Children’s Hospital, Akron, OH

Interactive Case Studies: Perspectives from a Child Neurologist, An Adult Neurologist, and Patient/Families
John J. Millichap, MD; Ann & Robert H. Lurie Children’s Hospital, Northwestern University Feinberg School of Medicine, Chicago, IL
Jessica Templer, MD; Northwestern University Feinberg School of Medicine, Chicago, IL

Case #1: Patient with Well-controlled Neurologic Condition, Typical Development, Expected to Live Independently
Case #2: Patient with Complex Conditions, Intellectual/Developmental Disabilities, not Expected to Live Independently

Q&A

Final Comments and Closing Remarks
Lawrence Brown, MD

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Browse the full CNS Annual Meeting schedule

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 our partners.

CNF was featured in the April Autism Awareness Issue of Exceptional Parent Magazine: “The Neurologist’s Role in Supporting Transition of Adult Health Care

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.”

CNF and Eisai Announce New Transitions of Care Resources for Young People Living with Epilepsy

For someone living with epilepsy who doesn’t successfully transition from a child neurologist to an adult neurologist, there are reported declines in their health. That can include: uncontrolled seizures which can increase the risk of injury, anxiety, depression and in rare cases death. Until now, people living with epilepsy had little guidance on how to achieve a successful transition.

The new resources include a video featuring experts who have experienced a successful transition and an interactive infographic — “Stay a Step Ahead”. The infographic provides actionable steps, with links to other helpful tools, that educate patients and caregivers while guiding them through a clear and predictable transition process. The video and infographic are available below and visit here for more resources and information.

Click on the image to access the full “Stay a Step Ahead” infographic:

To promote these new resources, Amy Miller, CNF Executive Director and Dr. Eli Mizrahi, CNF Transitions Project Advisory Committee member and Past-President of the American Epilepsy Society were interviewed on Beyond the Heart Doctor Radio on Sirius XM (available to more than 30M subscribers) on January 4th.

The 1-hour live interview included discussion on ways epilepsy may manifest in patients, the impact living with epilepsy can have on the entire family, and the challenges children and families may face when approaching the transition of care from a pediatric to adult neurology team. The show received several calls from individuals who have a close relative coping with epilepsy. Listeners were encouraged to be empowered and start conversations with their doctors regarding transition of care. Listeners were also directed to the CNF website for these and all transitions tools. The CNF and AES websites were posted on the station’s web page after the show. Listen to the show here.

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?”

CNF Videos Featured as a Trusted Resource

Read more in the article, “Transitions: Moving from pediatric care to adult care can be tricky. Here are eight questions to ask your doctor to facilitate the process” by Fran Kritz and available online in the October/November 2017 issue of Neurology Now.

Transitions Facebook Live Event

From the American Epilepsy Society annual meeting on Dec 2, 2017, 19 year old Megan Mejia discusses her experiences growing up with epilepsy with CNF TPAC Chairperson, Dr. Larry Brown. Megan is featured in the comic book, “Medikidz Explain Living With Epilepsy.” To order your copy, visit: www.advancingepilepsycare.com/medikidz

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: www.advancingepilepsycare.com/medikidz.

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: www.gottransition.org.

CNF thanks our 2018 partners – Eisai, Inc., Greenwich Biosciences, Horizon Pharma, Novartis Pharmaceutical Corporation, Retrophin, Inc., Sunovion Pharmaceuticals, Inc. and Ultragenyx – for their support.