Adults who had hemispherectomy surgery in childhood enjoy friendship and fun at our 2019 family and professional conference.

All young people must transition from pediatric to adult doctors at some point. Ideally, teens and young adults will make this transfer with the skills and knowledge needed to succeed in an adult-focused medical system. Unfortunately, most parents and teens don’t think about this transition until the child turns 18 … and the process is often disorganized and confusing. As a result, many young adults don’t receive the medical care they need and can be at increased risk for health issues if a smooth transition does not happen.

Health care transition can be challenging and overwhelming for teens and young adults with complex conditions.

Young people who had epilepsy surgery in childhood may have many health conditions that need to be managed throughout life. If not properly monitored by a doctor, these health conditions can have an impact on long-term physical and mental health. This is why it’s important that caregivers and young people understand the long-term outcomes of the underlying neurological disorder, type of epilepsy, and epilepsy surgery. Only with this information will it be possible to prepare for health care transition and transfer of care to adult doctors.

Health care transition is a gradual process that occurs over time rather than an abrupt change. Ideally, health care transition planning should start when the child is 13. It can take time for you and your child to learn about his/her brain surgery and its effects. Some young adults may not understand all of the physical, mental, and social consequences of their epilepsy and surgery and may need ongoing training and support. Start the process early if you can. Chunk your learning. Even if your child is already an adult, it’s not too late to learn about health transition!

Providing teens and young adults with support and training on needed skills to transition to an adult health provider has not been emphasized in school or social service systems. If  your teen lacks these skills, they may require more training; however, if your teen is unable to acquire these skills, then you need to ensure that other systems and supports are put in place to so that they are taken care of throughout their lives. Our new Educational Transition After Epilepsy Surgery guide includes a section on how you can include health care transition training and goals in your child’s IEP.

Areas to understand

  • Some young people after epilepsy surgery have physical, developmental or intellectual disorders, behavioral challenges, mental health issues, or a combination of these issues. These young adults may require more in-depth planning and ongoing support.
  • Problems may arise for patients who cannot speak and advocate for themselves, and some will need significant help to partner effectively with their doctors. Doctors can support full inclusion and access to medical care for patients with significant disabilities by making sure that their practice obeys physical access guidelines, communicating directly with their patients (including those who have communication or cognitive differences), and informing the family of legal and decision-making options.
  • Patients with hydrocephalus require lifetime care to monitor and treat their hydrocephalus (as well as any other common health conditions they may have). Often, young adults who had no shunt problems since early childhood had not established care with adult neurosurgeons and did not realize that they could be at risk for worsening their condition later in life. While pediatric neurosurgeons traditionally see children at regular intervals for follow-up, there are no formal guidelines for long-term care for adults with childhood-onset hydrocephalus.
  • Long-term management of young adults after childhood epilepsy surgery demands specific provider knowledge, skills, and experience with the underlying condition. Depending on the patient, many specialists may be needed in adulthood to manage conditions such as epilepsy, headaches, or sleep problems; cognitive, memory, mental, behavioral, endocrine or mobility issues; and their educational and job-related needs.

Which doctors can help with the transition to adult health care?

  • Neurologists – The Child Neurology Foundation and the American Academy of Neurology (AAN) have highlighted the role of child neurologists in “planning and coordinating the successful transition of youth with neurologic conditions from the pediatric to adult health care system.” Adult neurologists should also be involved in health care transition. Even if your child is seizure free, annual check-ups by a pediatric neurologist will provide the adult neurologist with a record of your child’s medical history. 
  • Pediatric neurosurgeons should work with other health care providers to prepare their patients for the eventual transfer to the adult health care system. Identify adult neurosurgeons early who are able and willing to participate in their care.
  • Primary care physicians should be involved in the patient’s health maintenance and care coordination. Primary care physicians may need education about what to expect from complex patients and what constitutes adequate care. Communication between the patient’s primary care provider and specialized care providers is essential.
  • Endocrinologists – Conditions such as diabetes insipidus, precocious adrenarche, precocious puberty, or other endocrine disorders may result from large epilepsy surgeries. These can be quite complex as disruptions to the brain due to epilepsy, surgery, or other causes can affect the endocrine system.
  • Neuropsychologists – It is essential to monitor and track neurodevelopmental trajectories throughout the lifespan. Sudden cognitive decline can be a sign of return or worsening of seizures or a new neurological condition. Neuropsychologists can identify needs and concerns via ongoing assessment.
  • Psychiatrists or psychologists may be needed to monitor the quality of life and support emotional well-being, behavioral issues, anxiety, or depression. They can also help identify problems and solutions with thinking, behavioral, and emotional issues. Attention deficit with hyperactivity disorder (ADHD) affects 20-40% of pediatric neurological disorders, depending on the underlying condition. ADHD remains present into adulthood and may have extreme effects on adult functioning. These adults will need complete and thorough adult care.
  • Physical Medicine and Rehabilitation doctors (also known as physiatrists) have a role working with patients who require long-term management, especially those with hydrocephalus or cerebral palsy. They can help the individual address mobility, spasticity, orthoses, and assistive technology; they may also coordinate physical, occupational, or speech therapy. Mobility for children with cerebral palsy may worsen in adulthood.
  • Ophthalmologists (specialized eye doctors) – Some epilepsy surgeries can disrupt neural networks responsible for vision, resulting in a wide range of possible vision issues after epilepsy surgery.
  • Audiologists (hearing and listening experts) – Epilepsy or epilepsy surgeries involving the temporal lobe or corpus callosum can affect central auditory processing.

How To Transition To Adult Health Care Providers

The Child Neurology Foundation’s Transitions of Care program provides excellent resources for young people with epilepsy, their families, and child neurology teams who are dealing with transition from pediatric to adult health care systems. Be sure to go to their website and familiarize yourself with the transition process! A quick overview of their 8 Common Principles of Transition of Care is here:

No later than the 13th birthday, the child neurology team introduces transition and transfer concepts. The team explains the difference between the pediatric model of care—where parents make most decisions—to the adult model of care—where youth take full responsibility for decision-making. The main goal is to assure the family of a systematic transition, ease any anxiety from changing physicians’ expectations, and prepare patients for the differences in expected independence levels. The doctor should meet privately with the adolescent for at least part of the appointment to help prepare caregivers and patients as they mature.

The child neurology team begins an annual assessment of the youth’s self-management skills soon after discussing transition. These assessments should be documented in the medical record and communicated to other health care providers. As patients mature, their self-care abilities and level of independence improve. A regular review of the youth’s self-management skills is vital. Suppose the patient or caregiver doesn’t fully understand the child’s conditions or its future impact. In that case, the care team can provide additional education. If self-management is not possible, it is critical to identify their lack of capacity for long-term planning.

The child neurology team engages the youth and their caregiver(s) in phased transition planning, patient education, and transfer readiness at least annually at scheduled visits, beginning at 13 years of age. Involving youths and their caregivers as active participants in their transition plans is critical; the engagement level may vary according to sociocultural issues and cognitive ability. Neurologists should educate patients regarding the management of their health, such as their current medical condition, ongoing and long-term medical problems; surgical history; daily self-care needs such as tracking health issues, managing medications, and knowledge of potential side effects, keeping appointments, and emergency planning; genetic counseling, with education on recurrence risk, puberty, and sexuality; and adolescent and young adult issues such as alcohol, driving, and substance abuse. Clinicians should also include monitoring of overall wellness (including emotional and psychological health) in these visits.

Child neurology teams should educate the youth and family about the adult approach to care, including legal changes in decision-making, privacy, and consent when the patient legally becomes an adult. By age 14, the child neurology team should begin discussing the youth’s expected legal competency, using annual assessments of their decision-making capacity. Some patients will require legal guardianship (full or limited, ranging from medical decisions or financial conservatorship to full decision-making authority given to a trusted adult).

The child neurology team should develop a transition plan that addresses the youth’s comprehensive care needs in collaboration with the youth, caregiver(s), other health care providers, school personnel, vocational professionals, community services providers, and legal services (as needed for decision-making plans). The plan should address health care financing, legal concerns, primary care, other specialty care, durable medical equipment, and education about employment, housing, and community services. The transfer package should include the following:

    • a carefully crafted medical summary;
    • a summary of the patient’s goals and preferences for adult service requirements;
    • the planned timing of transfer to adult providers;
    • any pending actions or ‘to do’ items, such as additional testing or assessments to be completed before transfer;
    • the latest transition readiness assessment (a review of the patient’s understanding of his or her diagnosis and management);
    • the most recent emergency care plan and the patient’s advance care plan status (e.g., medical power of attorney, living will, do not resuscitate order);
    • an indication of who holds decision-making rights.

The transition team includes the child neurology care team and other providers central to the patient’s care to address their complex medical conditions. Optimally, multiple parties collaborate and contribute. At its core, the team includes the youth and the caregivers, the primary care physician and additional staff at the “medical home,” subspecialists, and any other relevant health care providers. Developing, verifying, and updating the neurologic component of the transition plan of care is the child neurology team’s responsibility. The educational system, school personnel, vocational professionals, legal professionals, community service providers, and others can contribute valuable insights to this plan. The contributions from each area vary as needs evolve and may change over time.

Child neurology teams should help identify adult providers, send medical records, and communicate with adult providers about each of their patients’ unique needs. Alternatively, there may be a joint clinic transition model to prepare patients and families. The pediatric physician transfers all medical records to the adult team, attends the first adult clinic for several visits, and supports and educates the adult team. It is important to identify one physician in charge of your child’s transition process to ensure that a comprehensive transition plan exists.

Transfer does not mark the end of transition; young patients entering adult care often require specific attention as they continue to adapt to the adult care model. Pediatric providers may still consult with adult colleagues in complex cases.

Health Transition Skills

By the time of transition, teens and young adults with special health care needs should be able to:

Understand their condition and the treatment or intervention needed

Explain their condition and needed treatment or intervention to others

Monitor their health status on an ongoing basis

  • knowing day-to-day as well as emergency needs
  • what to do if they miss a dose of their anti-epilepsy medicine
  • how to fill a prescription
  • risks of heavy alcohol use
  • chances of oral contraceptive failure
  • telling future employers about their health status
  • how to handle an emergency

Ask for guidance from their pediatric health care providers and family on how and when to make the move from pediatrics to adult care

Learn about the systems that will apply to them as adults

Identify both formal and informal advocacy services and supports they may need to be as independent as possible while using trusted advisors/mentors

While transition is a challenging time for adolescents, their families, educators, and even health care providers, early and thorough planning can improve overall outcomes. The goal is to help youth who have had surgery for epilepsy live their happiest, most productive lives. There is currently no formal guidance on transitioning to adult neursurgical care after epilepsy surgery in childhood … but we’re working on it. Stay tuned!

Resources:

American Academy of Pediatrics (AAP), the American Academy of Family Physicians (AAFP), and the American College of Physicians (internal medicine doctors): “Supporting the Transition of Health Care from Adolescence to Adulthood in the Medical Home.” 

Child Neurology Foundation: Transition of Care, Self-Care Assessment(Youth/Young Adult), Self-Care Assessment (Parents/Caregivers), Sample Plan of Care, Sample Transfer Letter, Medical Summary for the transitioning patient.

Got Transitions:  Preparing For The Transition From Pediatric To Adult Health Care: Parent Guide

Hydrocephalus Foundation: Transition Initiative

Neurology Today: How to Smooth the Rocky Road As Children with Neurodevelopmental Disorders Transition to Adult Neurology

National Center For Supported Decision-Making

Adults who had epilepsy surgery in childhood (also known as self-advocates) can find lots of information at the Self Advocacy and Technical Assistance Center and The Arc’s Future Planning page.

The Adult Transition Taskforce of the Rare Epilepsies Network has checklist of various things to do at different transition points in life. We’ve revised the checklist a bit so that it’s more appropriate for our community: Transition to Adulthood Checklist – revised (PDF)

About the author

Audrey Vernick is the Director of Patient and Family Advocacy for The Brain Recovery Project. She is the parent of a child who had hemispherectomy for seizures caused by stroke. Ms. Vernick holds a level 2 certification in Special Education Advocacy Training from the Council of Parent Attorneys and Advocates and is certified by The ARC in future planning. She represents The Brain Recovery Project in the Rare Epilepsy Network‘s Adult Transition Taskforce.