Transitioning Youth to the Adult Healthcare System

Transitioning from the pediatric to adult healthcare system should be expected for all patients living with a neurologic condition. While it will vary among patients as to how that transition will look, when the transition will happen, and who the transition will involve, the central goal of starting the transition planning discussions early (<14 years) to ensure the youth attains his/her level of optimal independence should guide all transition planning processes.

Advancing Transition in the Neurology Community:
Strategies for Families and Adult and Child Neurologists

Advances in the understanding and treatment of childhood neurological conditions over the past several decades have allowed many children with neurological conditions to live longer and more independent lives. An increasing number of youth living with neurological conditions are surviving into adolescence and adulthood, reaching the stage at which they are expected to transition to the adult medical care system, where the medical concerns of adults are best addressed. While such transition is an expected life process for all, transitioning from the child neurologist to the adult health care system can be overwhelming for young adults living with neurologic disease, and the necessary supports and services are often fragmented.

While medical transition is ideally coordinated by the medical home provider, many in the neurology community have recognized that youth living with neurologic disease comprise a particularly vulnerable population, whose needs are not currently well addressed. Providers of neurological care have expressed concern and interest in improving their role in medical transition—as partners of the medical home. Growing evidence and current expert opinion suggest a planned, coordinated and comprehensive transition assures continuous access to care for medical conditions, appropriate support for the many concerns of adulthood, and the greatest potential for maximizing each young adult’s self efficacy and management skills to enable an appropriate degree of independence.

The Neurologist’s Role in Supporting Transition to Adult Health Care: A consensus statement

In support of these burgeoning efforts, the Child Neurology Foundation (CNF) convened an expert panel on transition, which authored the consensus statement, The Neurologist’s Role in Supporting Transition to Adult Health Care. The consensus statement, endorsed by the American Academy of Neurology (AAN), Child Neurology Society (CNS) and American Academy of Pediatrics (AAP), was created by an independent panel of 13 interdisciplinary experts based on a review of research literature. All content was solely developed by the Child Neurology Foundation. The research is published in the July 27, 2016, online issue of Neurology®, the medical journal of the American Academy of Neurology and is available to the public at-large.  Read the consensus statement on the Neurology® website.

This Transition Consensus Statement identifies eight Common Principles for neurologists to adapt and employ to support the medical transition of youth with neurological conditions. They are intended to enhance cooperation between a child neurologist or other neurology care provider, the patient’s medical home provider and other pediatric and adult specialists engaged in the youth’s care, and the patient and caregivers, in order to assure appropriate support for a successful transition.

The Transition Consensus Statement provides the neurology community’s response to the 2011 American Academy of Pediatrics, American Academy of Family Physicians, and the American College of Physician’s statement, Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home, which calls for specialists to develop customized guidance to address concerns specific to their field. While the successful transition of medically complex patients can require the engagement of cadres of pediatric and adult specialists, this discussion and the efforts advanced here are focused on the role of neurology providers, ideally working in collaboration with the patient’s medical home provider and patient/family.

Transitions Project Advisory Committee (TPAC)

Publications such as the Transition Consensus Statement are only effective if actually used, hence CNF teamed with the Child Neurology Society (CNS), the American Academy of Neurology (AAN), the American Academy of Pediatrics (AAP), and the Association of Child Neurology Nurses (ACNN)  to develop a Transition Project Advisory Committee (TPAC) charged with  identifying and implementing strategies for dissemination of the Transition Consensus Statement, as well as the implementation and assessment of projects reflecting the eight Common Principles for transition identified in the statement.

Affected Communities and Cultural Change: Within Neurology

Medical transition from pediatric neurology to adult care creates and occurs at the intersection of three distinct communities: patients and their families, pediatric health care providers, and adult health care providers. While each of these communities is committed to the well-being of the patient, each can approach transition with specific concerns or resistance.Diagram Patients and families are often reluctant to leave the comfort of a long-standing relationship of trust with their child neurologists; child neurologists can also be reluctant to let go of patients—more often, they feel overwhelmed by the daunting array of tasks associated with successful transition. Adult neurologists may be unfamiliar with and reluctant to address rare pediatric conditions or combinations of conditions. Accustomed to a culture of specialization, adult neurologists may also be hesitant or reluctant to assist the coordination of the systems of care necessary to maximize the independence of some young adult patients. In order to effectively communicate the importance of successful transition to all of these communities, education and messaging must be tailored to each of them. Identifying trusted messengers and media will play a role in these efforts.

TPAC recognizes that bringing these audiences into relationship with one another, around the goal of successful transition, will in some ways require a shift in culture. 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.

Rogers’ Bell Curve has been adopted as a model for understanding the audiences within each target community to which TPAC will direct its efforts and attention. The Rogers model asserts that individuals with differing degrees of innovativeness can be found in any community. CatInnApproximately 16% of a community is comprised of Innovators (2.5%) and Early Adopters (13.5%), willing to try new approaches, or even to invent them. Another 16%, the Laggards, will hearken back to the good old days long after the new approach has become standard practice. The largest group in any community is comprised equally of Early Majority and Late Majority members. The success or failure of innovation depends upon the success of Innovators and Early Adopters in building momentum and proving their path, or the success of the Laggards in resisting.

TPAC understands that initial efforts must be directed to the Innovators and Early Adopters in each of the affected communities. In subsequent years, after models are developed and proven and evidence for transition services mounts, broader approaches to encourage the Early Majority will be adopted.

System-level Concerns

In addition to recruiting Innovating and Early Adopting families and neurologists to provide transition services and help build the research base for them, TPAC recognizes the need to address four important and overarching barriers to transition services:

  • The lack of reimbursement for transition-related services, which can make them unfeasible for professionals or unaffordable to families.
  • Variations in the age of majority and requirements for determining competency and establishing guardianship. Such variation complicates efforts to create national guidance for families and child neurology practices, regarding the care of young adults with intellectual disabilities. Families and child neurologists who live and practice in metropolitan areas that cross state lines (e.g., New York, St. Louis) must master these variations in order to successfully navigate transition.
  • Professional shortages: national and regional shortages in the areas of psychiatry, neuropsychology, and genetic counseling; local shortages in these and relevant supporting professions/services, such as social work or legal aid; and micro-shortages in private practices, which may lack support staff to provide transition services.
  • The perception that transition services require too much time to be feasible. More information is needed to determine whether this perception can be mitigated through increased reimbursement, and/or strategies to reduce professional shortages.

Addressing these barriers to transition will require a national effort, focused on public and private payers and federal and state policies—neither the climate nor the activity that inspires innovation or early adoption, but a critical arena in which to advocate for change. Implementation efforts cannot be delayed while these policies changes are sought, but transition services will not appear to be feasible for large groups of professionals if these barriers are not addressed. Concurrent with efforts to engage patients, families, child neurologists, advanced practice providers and adult neurologists in adopting and adapting common principles for transition, TPAC recommends AAN, CNS and CNF work in partnership and build coalitions of provider, patient, and disease advocacy organizations to:

  • Communicate the challenges transition barriers pose to neurologists, patients, and families to policy makers;
  • Suggest and support policies to increase reimbursements, address professional shortages, and minimize the impact of State variation; and
  • Support and conduct research to establish the cost-effectiveness of transition services for neurologists, families, and payers.

Engaging Innovators and Early Adopters Among Communities of Concern

Patients and Families

The most trusted and effective messengers to patients with neurological conditions and their families are other patients with neurological conditions and their families. Those who have already moved through the transition to adult health care can serve as models and mentors for resistant patients and families. TPAC will serve as a conduit for connecting these Early Adopters, and for disseminating outcomes of their work.

  • CNF, in collaboration with CNS and AAN, will develop consumer education materials reflecting the Common Principles in a health literate manner, in order to assist in establishing consumer expectations regarding their neurologist’s role in medical transitions. CNF will develop and adopt programmatic initiatives to engage patients and families in efforts to advance implementation of Common Principles in neurology practices. Such efforts may include:
  1. Dissemination, evaluation, and refinement of models of parent-to-parent, patient-to-patient, and family-to-family support, such as initiatives to train and employ parents of children with neurological conditions as patient navigators, which are already underway in some areas of the country.
  2. Support for efforts through advocacy and local support groups to identify individuals and families that might serve in leadership/mentorship roles. These groups can also play a role in providing direct support for patients and families, developing local resources and resource guides, and building an effective advocacy organization, to promote needed policy change.
  3. Serving as a conduit to connect local chapters of professional societies with family organizations on collaborative initiatives such as the development of resource directories for patients, families, and local neurology practices.

Adult Neurologists

Establishing transition services will require an expanded understanding of the scope of work of adult neurologists. Child neurologists cannot assure successful transition without engagement and assistance from their adult neurology colleagues. Increasing opportunities for shared learning and collaboration between child and adult neurologists, and supporting adult neurologists in expanding their expertise and comfort with a variety of child neurology patients and their transition needs are critical innovations necessary to advance successful transition for this community. To that end, TPAC recommends the following efforts:

  • The AAN’s endorsement of the Common Principles advanced in the Transition Consensus Statement and the AAN’s support for transition services will help to assure some engagement and dialogue about transition from adult neurologists. The initiation of such dialogue will assist in identifying those adult neurologists willing to become Early Adopters of this new transition model. Developing methods to further understand adult neurologists’ reception to transition and the recommended Common Principles will be necessary to in advancing implementation strategies.
  • The CNS will develop and provide education on transition, and assure ongoing education regarding care for adolescents and young adults with rare (or previously rare in adulthood) conditions.
  • The CNF will support both CNS and AAN in their efforts to increase training opportunities for both child and adult neurologists through incorporating partnerships with patients, parents, disease advocates and funders.
  • The Neurologist’s Role in Supporting Transition to Adult Health Care promotes relationships between child neurologists and adult neurologists and other relevant adult health providers, to include ongoing consultation regarding conditions with which the adult neurologist may be unfamiliar. As child neurologists and adult neurologists/specialists increasingly understand themselves to be collaborators in transition care, they may begin to identify more strongly with willing colleagues across the pediatric-adult divide, and less with the Laggards in their “own camp.”

Child Neurologists

Barriers to putting transition services in place among child neurologists include practice-based challenges, such as a lack of support staff in small private practices and the challenge of delegating and assuring responsibility for transition services among staff in larger practices. In addition, child neurologists will require competencies and expertise extending beyond the medical arena in order to provide successful transition services. To engage and support Innovative and Early Adopting child neurologists willing to take up these challenges, CNF, in partnership with CNS and AAN, and anticipating fruitful collaboration with GotTransition.org, proposes to implement projects related to:

  • Identifying, curating, and creating tools to guide child neurologists and child neurology practices through the initiation and provision of transition services. Addressing the logistical hurdles to providing transition services may go a long way to mitigating resistance, particularly as successful transition models are initiated, tested, and disseminated among Early Adopters of this transition guideline.
  • Identifying and providing opportunities for training in special transition-related competencies.
  • Sharing and evaluating models of transition services in order to identify and disseminate best practices. It is important to note that best practices may not center around the neurologist on the team, but another team member (nurse, care coordinator, social worker, etc.) more suitable to lead transition activities in certain practice contexts. Further exploration of the various interdisciplinary roles is warranted.

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

Six Core Elements of Health Care Transition 2.0

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.

Transition Planning for Adolescents with Special Health Care Needs and Disabilities: A Guide for Health Care Providers [PDF]

This booklet is written for providers (pediatricians and nurses) but contains handouts that should be copied and given to families and adolescents.

Transition to Adulthood for Youth with Disabilities: Evidence from the Literature

With the dramatic growth in published literature on this topic in the past decade, there is a need to keep up with the current evidence that is emerging. This article outlines the findings from a comprehensive review of the literature conducted in 2008 that includes all aspects of the transition to adulthood, not simply transition services, and for youth with all types of disabilities. The discussion section synthesizes the current evidence from the literature to make recommendations for services, supports and research.

Visit our Patient/Caregiver Transition into Adulthood page for specific information and resources to share with patients and families to guide them through the transition process.