Transition to Adult Care for Youth with Chronic Neurological Disorders

Youth with chronic neurological disorders eventually need to move to adult health care. Transition is a process beginning in early adolescence to help these youth to be successful in managing their disorder in adulthood. Transfer is the process of passing responsibility for health care from a pediatric to adult healthcare provider. This chapter reviews the goals of transition and why the process may be difficult. Listed are special issues that may be encountered in transition/transfer for youth with chronic neurological disorders. The evidence for the value of transition programs is reviewed along with current guidelines for transition/transfer programs. Current models for transition/transfer programs are described with the caveat that the evidence base for these programs is somewhat limited.

Most children with chronic neurological disorders become adults with chronic neurological disorders. As treatments in pediatrics have improved, many who previously died in childhood now live well into adulthood. For example, prior to steroids and ventilatory support, boys with Duchenne muscular dystrophy died by the end of the teenage years but now, on average, they survive into the their 40s. As adolescence comes to an end, youth with neurological disorders move from pediatric to adult care. While this seems like a simple process, it is often complex and anxiety provoking for the patient, family, and healthcare system.

The move from pediatric to adult care ideally involves two concepts—transition and transfer, terms that are often used interchangeably but have different connotations. “‘Transition’ is the purposeful, planned process that addresses the medical, psychosocial, and educational/vocational needs of adolescents and young adults with long-term conditions as they move from child-centered to adult-oriented healthcare systems ( ). Transition should begin in early adolescence and continue after transfer. ‘Transfer’ is the formal event when the health care of a young person moves from children’s to adults’ services” ( ). Transfer is usually at an age determined arbitrarily by the healthcare system and rarely is based on the developmental stage and abilities of the patient or needs of the family.

The goals of transition are at minimum threefold ( ). First, educate youth at a level that they can understand about their disorder and its clinical course and treatment. Youth need to learn to become skilled in managing all aspects of their disorder with good adherence to medication and treatment protocols. They need to learn how to explain their personal healthcare concerns to adult healthcare providers, their peers, and other community members. Second, patients need to learn about and accept lifestyle changes that are imposed by their illness. For example, youth with uncontrolled epilepsy are not permitted to drive automobiles and their alcohol consumption should be modest. Third, transition/transfer programs need to initiate and, if possible, cement an ongoing relationship between the young person with a chronic neurological disorder and their adult care team.

Why is Transition Sometimes Difficult?

There are several reasons why the goals of transition may be complicated to achieve. Pediatric care is very family-centered: children are accompanied to healthcare visits by their parents and a great deal of the visit may be devoted to parental issues. Adult care is typically focused on the individual. The patient sees the adult physician by him/herself and communication with the family is expected to happen separately by the patient. Children with chronic neurological disease are often physically and emotionally dependent on their parents, rarely attend pediatric visits by themselves, and may not be encouraged to explain their medical or social problems to healthcare workers—it is easier and quicker to ask the parents to do the communication, since they always have. The neurological disorder may have been explained to the parents long before the child could understand, and the explanation not repeated as the child approaches adulthood. The relationship between pediatric specialists and families of children with chronic neurological disorders has often spanned more than a decade and is close and trusting. Parents and pediatricians are reluctant to change. We suspect that the greater the complexity of the pediatric disorder, the greater is parental anxiety about transfer to adult care. In addition, many youth with neurological disorders have multiple healthcare problems that have been cared for in a multidisciplinary clinic—a model of care that is uncommon in adult medicine.

Intellectual disability (ID) accompanies many pediatric neurological disorders and adds additional complexity to transition/transfer. Adult physicians may be uncomfortable with ID, their offices and waiting rooms too small or unsatisfactory in other ways for a large adolescent with ID accompanied by several caregivers. The youth with ID may be loud and intimidating to others in the waiting room and too heavy to lift onto an examining table. A Delphi study of 134 general internists in the United States identified 8 adult physician concerns: lack of training in congenital and childhood-onset conditions, lack of family involvement, difficulty meeting patients’ psychosocial needs, need for a super specialist for complex disorders such as congenital heart disease, lack of adolescent training, facing disability/end-of-life issues shortly after transfer, financial pressures limiting visit time, and families’ high expectations ( ).

The transfer to adult care means a change for the entire family and the model of multidisciplinary care is uncommon—health care is likely to become fragmented with multiple appointments in different settings with adult specialists who may have little experience or knowledge with the young person’s specific disorder. Pediatricians may have communicated to the family their doubt about the ability of the adult care system to offer comprehensive care, while adult physicians may view pediatric care as smothering and overindulgent.

Transition preparation and transfer occur during important stages of social and emotional development of adolescents when mature peer relationships, personal identity, and sense of life goals are cemented. Youth with chronic neurological disease are often unable to become completely independent. Their sense of self-identity and self-worth are likely to be disrupted along with poor development of close peer relationships. Normal stages of sexual development are difficult to achieve when the youth is dependent on others for much of their care. Milestones of independence may be hard to achieve, especially driving, which may be curtailed because of epilepsy, physical disability, or cognitive problems.

What Happens Without a Transition Program?

It is tempting to dismiss the above concerns and simply expect that the patient and family will eventually adapt to adult care. While there are limited systematic studies of the value of transition programs, there are a few that strongly indicate that poor transition leads to poor adult health outcomes. The most poignant examples come from experiences of youth who have had kidney transplants and then been transferred to adult care. A UK study found that between 2000 and 2006, of nine youth simply transferred to adult care, six rejected their graft shortly after transfer and had to go back on dialysis ( ). Presumably these “disasters” were the result of poor adherence to anti-rejection medications. Following the introduction of a transition program, there were no lost grafts in the next 12 patients. A similar result was noted in British Columbia where it was possible to show that the cost of an extensive transition program was considerably less than the cost of a few patients going back onto dialysis ( ).

For youth with juvenile diabetes, poor control of serum glucose leads directly to many adult health problems including loss of vision and cardiovascular disease. A meta-analysis in 2017 identified 18 controlled trials about transition involving 3382 youth with type 1 diabetes ( ). Even though Hemoglobin A1c (HgA1c) levels (a marker of overall glucose levels) remained unchanged, there were consistent findings that transition programs lead to fewer episodes of ketoacidosis and hypoglycemia.

It is possible to speculate about the effect of poor transition/transfer programs for youth with neurological disorders. Examples might be epilepsy, attention deficit disorder (ADD), and cerebral palsy. For those with epilepsy, poor medication compliance would lead to more frequent seizures, episodes of status epilepticus, emergency room visits and hospitalizations, and sudden unexpected death (SUDEP; ). Those without contact with adult epilepsy services would be unlikely to use newer treatments and might not be considered for epilepsy surgery. For patients with ADD, poor compliance might lead to more automobile accidents, higher rates of unemployment, and more sexual misadventure ( ). For those with cerebral palsy, poor attendance at rehabilitation sessions could lead to decreased ambulation.

There are no randomized controlled trials that establish the value of transition programs for chronic neurological disorders. In order to justify the “extra” expenses involved in transition programs, there is a strong need for systematic studies that examine health outcomes and costs ( ).

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