Consensus statement helps children with epilepsy navigate transition of care from a pediatric to an adult provider
By Adriene Marshall
As pediatric neurology patients, including those with epilepsy, approach adulthood, it makes sense that their health care needs also will evolve. Yet for many young patients, caregivers, and physicians, the transition of care to a neurologist who treats adults is a challenging prospect. Transition of care requires careful planning and diligence, but a 2016 consensus statement by the Child Neurology Foundation, in collaboration with multiple partners including the American Academy of Neurology, the American Academy of Pediatrics, and the American Epilepsy Society, outlines the steps needed for a smooth transition.
There are various reasons why the development of transition-of-care tools has become an important issue, Lawrence W. Brown, MD, immediate past president of the Child Neurology Foundation, told The Epilepsy Journey. “In part, it is our success in helping children with neurological disorders survive into adulthood, in part the recognition that the best quality of life for young adults demands optimal medical care that can be provided only by adult neurologists, and in part because the field of child neurology has limited manpower and must make room for the next generation of patients.” Dr. Brown is associate professor of neurology and pediatrics at the Children’s Hospital of Philadelphia and the University of Pennsylvania, Philadelphia.
Dr. Lawrence W. Brown
Pitfalls for youth with epilepsy
Patients with epilepsy have their own unique concerns when it comes to transition of care, according to a 2012 article by P. Camfield et al. While as many as 60% of patients are able to discontinue antiepileptic drug treatment in childhood because of remission of seizures, the other 40% or so need extended, if not lifelong, treatment in adulthood. Epilepsy that begins in early childhood and persists into adulthood is strongly associated with mental handicap, the authors pointed out, and some pediatric patients whose seizures remit continue to have other associated comorbidities – specifically cognitive deficits, behavioral disorders, and motor impairments. Epilepsy that develops in adolescence, such as in juvenile myoclonic epilepsy, is unlikely to remit. “The child neurologist/epileptologist may doubt that adult epilepsy services will adequately care for their patient, particularly the comorbid problems. Adult epileptologist often feel ‘unfamiliar’ and overwhelmed by the complexity of pediatric epilepsy syndromes and their associated comorbidities,” Peter Camfield, MD, and his colleagues pointed out.
The child neurologist/epileptologist may doubt that adult epilepsy services will adequately care for their patient, particularly the comorbid problems. Adult epileptologist often feel ‘unfamiliar’ and overwhelmed by the complexity of pediatric epilepsy syndromes and their associated comorbidities.
Key problem areas that may affect normal maturation in adolescents with epilepsy are autonomy, body image, peer group identity, and self-identity. In addition, adolescent patients may not know much about their care, including how to refill a prescription or explain their epilepsy diagnosis and its treatment to others. Among adults who have childhood-onset epilepsy, research suggests poorer social outcomes, compared with the general population, Dr. Camfield, professor emeritus of pediatrics at Dalhousie University in Halifax, N.S., and his colleagues pointed out, such as lower educational attainment; lower rates of employment, long-term romantic relationships, and marriage; and a higher likelihood of being convicted of a crime.
We need to continue to recognize these differences, start early in adolescence to gradually better understand their medical condition, help them to assume personal responsibility and to become as independent as possible, and help families identify adult providers and secure legal protections where necessary.
While the Child Neurology Foundation consensus statement focuses on the needs of all youth with neurologic disorders, there is no “one size fits all,” Dr. Brown says. “Many older teens with epilepsy are getting ready for college and full independence, while others are completing special education and the termination of services and supports to their family. We need to continue to recognize these differences, start early in adolescence to gradually better understand their medical condition, help them to assume personal responsibility and to become as independent as possible, and help families identify adult providers and secure legal protections where necessary.”
Dr. Peter Camfield
- By the time the child is aged 12-13 years, the child neurology team should discuss with the child the expectation of future transition to an adult care provider. Among other benefits, starting discussions early gives youth and caregivers time to understand the need for transition and provides sufficient time to help the patient develop self-management skills.
- Assessment of self-management skills should begin at age 12 years and annually thereafter. At minimum, this assessment should include patients’ understanding of their condition and related limitations, as well as knowledge about and responsibility for their own care plan. Individuals with mild intellectual disability may be able to become responsible for knowing their diagnosis, taking medication independently, and participating in their care. However, annual reassessment may not be as necessary for patients with more severe impairments that are static or progressive.
- The child neurology team should engage youth and their caregivers annually in phased transition planning, patient education, and transfer readiness sessions at scheduled visits, beginning at age 13 years. These sessions should address the youth’s medical condition, current medications and potential side effects, genetic counseling and reproductive implications of her/his condition, and issues related to puberty and sexuality, driving, alcohol and substance use, and emotional/psychological wellness.
- The child neurology team should discuss with the caregivers whether there is a need for legal guardianship and powers of attorney by the time the patient is age 14 years. If the youth’s expected legal competency is unclear, an assessment of that capacity should be made annually and supported by formal psychological or neuropsychological assessment.
- By age 14 years, the child neurology team should develop a comprehensive transition plan in collaboration with the youth, caregiver(s), other health care providers, school personnel, vocational professionals, community services providers, and legal services (as needed). Concerns should include education, employment, and housing. The plan should be reviewed annually.
- The child neurology team should develop and verify the neurologic component of the transition of care plan and update it annually. The neurologic assessment should include a summary of the patient’s goals and preferences for adult services, the planned timing of the transition to an adult provider, any necessary additional assessments to be completed before transfer, and the youth’s advanced plan of care or plans for establishing guardianship.
- In collaboration with the patient and caregiver(s), the child neurology team should identify an appropriate adult provider. At that time, the child neurology team should forward a medical transfer packet that includes documentation of the underlying etiology, previous and current treatments and diagnostic evaluations, and protocol for emergency care. Before the actual transfer of care, patients may want to have a preliminary visit with the adult provider.
- The child neurology team should communicate directly with the identified adult provider(s) to confirm that the transfer is complete and adult care has been established. The consensus statement notes that adult health care providers may be more open to accepting patients with neurologic conditions if they can have direct access to the pediatric provider should questions arise.
Brown LW et al. The neurologist’s role in supporting transition to adult health care: A consensus statement. Neurology. 2016;87(8):835-40.
Camfield P et al. Transition from pediatric to adult epilepsy care: A difficult process marked by medical and social crisis. Epilepsy Curr. 2012;12(Suppl 3):13-21.
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