Transition of care consensus statement
The Child Neurology Foundation consensus statement distills the transition process into eight common principles. Document the performance of each step in the patient’s medical record.
The principles are as follows:
1. 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.
2. 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.
3. 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.
4. 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.
5. 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.
6. 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.
7. 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.
8. 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.