For Providers: Transitioning to the Adult Health Care System
Each patient transitioning from a child neurologist to an adult neurologist will have unique experiences and needs. The goal of CNF’s Transition of Care Program is helping to support youth, families, and child neurology teams in the medical transition from pediatric to adult health care systems. 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 statement identifies 8 Common Principles for the neurology team to adapt and employ–supporting the medical transition of youth with neurologic conditions.
** Visit our youth/families page for information to share with patients and families to guide them through the transition process **
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 Responsibilites
- Identification of Adult Provider
- Transfer Complete
and matches it to downloadable tools that you can start using in your practice today. 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:
- Transitions Policy
- Self-Care Assessment (Parents)
- Self-Care Assessment (Youth)
- Transition Package Cover Page
** These tools can also be used by patients and families to start the transitions conversation with providers **
*The CNF gratefully acknowledges the work of the Transitions Project Advisory Committee (TPAC) to develop these tools. TPAC is supported by Eisai, Inc. (Sustaining Sponsor), Novartis Pharmaceuticals (Supporting Sponsor), Ipsen Biopharmaceuticals (Advocate Sponsor), and Upsher-Smith Laboratories (Advocate Sponsor).
** Several of these tools have been customized from Got Transition’s Six Core Elements of Health Care Transition and were 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)
The TPAC was initially charged with identifying and implementing strategies for dissemination of the Transition Consensus Statement, as well as the implementation and assessment of projects reflecting the 8 Common Principles for transition identified in the statement.
Patients and families cannot continue indefinitely in pediatric care, and may have to build relationships with multiple medical professionals as they begin to navigate the world of specialty care. Adult neurologists must be invited to consider their role within a community of care, and child neurologists to appreciate the importance of their role throughout the transition process, and perhaps even beyond transition, as consultants to their adult colleagues.
Support for the medical transition of youth living with neurological conditions is a small but critical acknowledgment that youth should not simply survive to adulthood: they should thrive as adults. Enhancing and strengthening transition support is a requirement of our success at extending the lives of children in our care.
In collaboration with health care professionals, patients, families, and advocacy organizations, TPAC is positioned to work towards 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 amidst the neurology community; more importantly, we believe such partnerships will enable affected young adults to attain their fullest potential.
Transition Resources for Your Practice
Aligned with the AAP/AAFP/ACP Clinical Report on Transition, Got Transition/Center for Health Care Transition has outlined the Six Core Elements of Health Care Transition 2.0 that define the basic components of health care transition support. These components include establishing a policy, tracking progress, administering transition readiness assessments, planning for adult care, transferring, and integrating into an adult practice. There are three sets of customizable tools available for different practice settings.
This booklet is written for providers (pediatricians and nurses) but contains handouts that should be copied and given to families and adolescents.