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The Neurologist’s Role in Supporting Transition to Adult Health Care

The child neurologist has a critical role in planning and coordinating the successful transition from the pediatric to adult health care system for youth with neurologic conditions. Leadership in appropriately planning a youth’s transition and in care coordination among health care, educational, vocational, and community services providers may assist in preventing gaps in care, delayed entry into the adult care system, and/or health crises for their adolescent patients. Youth whose neurologic conditions result in cognitive or physical disability and their families may need additional support during this transition, given the legal and financial considerations that may be required. Eight common principles that define the child neurologist’s role in a successful transition process have been outlined by a multidisciplinary panel convened by the Child Neurology Foundation are introduced and described. The authors of this consensus statement recognize the current paucity of evidence for successful transition models and outline areas for future consideration. Neurology® 2016;87:835–840 The child neurologist has a critical role in planning and coordinating the successful transition of youth with neurologic conditions from the pediatric to adult health care system. Appropriate leadership and planning of a youth’s transition, and care coordination among health care, educational, vocational, and community services providers, may assist in preventing gaps in care, which otherwise may result in a youth running out of medication or delaying entry into the adult medical system through failure to make or keep appointments. Preventable health crises may develop, for which no clear medical specialist has been identified to provide care. Youth whose neurologic conditions result in cognitive or physical disability and their families may need additional support to address the particular legal and financial considerations of the transition they face. Barriers to successful transition have been identified and ample evidence demonstrates that many youth, particularly those with special needs, continue to receive insufficient transition planning. Several models of transition support have been developed and are beginning to be tested, although the available evidence remains insufficient to identify the best models. In acknowledgment of this clinical reality, and in response to the 2011 clinical guideline of the American Academy of Pediatrics/American Academy of Family Physicians/American College of Physicians “supporting the healthcare transition from adolescence to adulthood in the medical home,” in which specialty providers were called to develop a framework for their population’s unique needs, the Child Neurology Foundation convened a multidisciplinary panel of experts in 2014 to develop this guideline. The authors of this consensus statement recognize the current paucity of evidence for successful transition models, and so propose 8 common principles that should be incorporated in any transition model, and which define the child neurologist’s role and responsibilities throughout the transition process. Future areas of From The Children’s Hospital of Philadelphia (L.W.B.); Dalhousie University (P.C.); independent medical writer (M. Capers); Mayo Clinic (G.C.); Indiana University School of Medicine (M. Ciccarelli, S.M.D.); Brigham and Women’s Hospital (C.M.d.G.); McGill University (A.M.); Child Neurology Foundation (A.B.M.); Lennox Gastaut Syndrome Foundation (C.S.); Texas Children’s Hospital (R.S.); Louisiana State University Health Sciences (A.T.); patient advocate (A.W.); and Children’s Hospital of Orange County (M.Z.). An expanded version of the consensus statement, including vignettes highlighting the broad applicability of the recommendations over a variety of neurologic disorders of childhood, can be found on the Neurology® Web site at Neurology.org. Go to Neurology.org for full disclosures. Funding information and disclosures deemed relevant by the authors, if any, are provided at the end of the article. © 2016 American Academy of Neurology 835 a 2016 American Academy of Neurology. Unauthorized reproduction of this article is prohibited. consideration are also included. The consensus statement was endorsed by the American Academy of Neurology on July 28, 2015, the Child Neurology Society on May 8, 2015, and the American Academy of Pediatrics on October 21, 2015. METHODS The Neurology Transition Consensus Panel, an interdisciplinary team including child neurologists, child neurology nurses, adult neurologists, rehabilitation specialists, patients, and family members of neurology patients, worked more than 24 months in developing the consensus statement. A medical informatician and a medical writer assisted. The medical informatician guided the panel in language choices that would facilitate the transfer of the common principles into the functionality of an electronic health record. A member of the panel conducted a literature review of the PubMed/MEDLINE and EMBASE databases preferentially concentrated on papers published within the last 10 years and focused primarily on neurologic disorders. Older papers and book chapters that were seminal or relevant to transition in general were also included from bibliographies of the research identified in the first round search. These findings were presented to the full panel, which then discussed their interpretations of the identified research, as well as their own expert opinion. The consensus paper’s findings stem from such discussions, which subsequently underwent peer review by expert external groups.