The transition for an adolescent or young adult with a neurologic disorder into adult care can be challenging, but steps outlined in a leading medical journal can help pediatric neurologists and pediatricians to ensure a smooth progression.
Dr. Mary Zupanc, division chief of pediatric neurology at CHOC, is among the 14 authors of the consensus statement published in Neurology, the journal of the American Academy of Neurology.
After reviewing studies published in the last decade on transition of neurologic disorders, the authors outlined eight best practices to ensure a smooth transition:
- Discuss with the patient and family the expectation of future transition into adult care before age 13.
- Assess self-management skills at age 12 and yearly thereafter.
- Annual transition planning sessions should also address current medications and potential side effects; signs and symptoms of concern; genetic counseling and reproductive implications of the condition; issues of puberty and sexuality; driving, alcohol, substance use and other risks; and emotional or psychological concerns and wellness.
- Discussions with caregivers about the patient’s expected legal competency (e.g. whether a need for legal guardianship and powers of attorney exists) should begin by age 14. If unclear, legal competency assessment should occur annually.
- For pediatricians, develop a comprehensive transition plan that considers health, finances and legal care by age 14. Collaborate with the patient, caregivers, other health care providers, school personnel, vocational professionals, community services providers and legal services.
- The child’s neurology team should develop the neurologic component of the transition plan and update it annually.
- Collaborate with the patient and caregivers to identify adult providers before the anticipated transfer time. A medical transfer packet prepared for the adult provider and provided to the youth should include the transition plan and medical summary with pertinent history, diagnostic evaluations, previous drug trials, current medications and protocol for emergency care.
- The patient’s neurology team should communicate directly with the new adult provider to ensure a smooth transition, which is finalized after the first appointment. Neurologists should remain available both to the youth and the adult provider for continuity and support.
The statement has been endorsed by the Child Neurology Society, American Academy of Neurology and the American Academy of Pediatrics.
Read the paper in its entirety in Neurology.
