CONTEMPORARY
ISSUES
Lawrence W. Brown, MD
Peter Camfield, MD,
FRCPC
Melissa Capers, MA
Greg Cascino, MD
Mary Ciccarelli, MD
Claudio M. de Gusmao,
MD
Stephen M. Downs, MD
Annette Majnemer, PhD,
FCAHS
Amy Brin Miller, MSN
Christina SanInocencio,
MS
Rebecca Schultz, PhD
Anne Tilton, MD
Annick Winokur, BS
Mary Zupanc, MD
Correspondence to
Dr. Brown:
brownla@email.chop.edu
Supplemental data
at Neurology.org
The neurologist’s role in supporting
transition to adult health care
A consensus statement
ABSTRACT
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, educa-
tional, 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 Foun-
dation 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
1–3
and ample evidence demonstrates that
many youth, particularly those with special needs, continue to receive insufficient transition
planning.
4–7
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.
5,8–12
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,
13
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.