Children and youth represent one of the fasting growing populations affected by epilepsy, which is the most common childhood neurologic condition in the United States1. Epilepsy is a condition of recurrent unprovoked seizures and occurs more frequently in children and youth, as well as the elderly. There are approximately 450,000 children ages birth to 17 years with epilepsy.
The clinical spectrum of children and youth with epilepsy (CYE) varies as some forms of epilepsy can have dramatic effects on brain development in early childhood and lead to poor functioning later in life. There are many etiologies for the disease that range from genetic and metabolic conditions to infections, trauma, and developmental brain disorders. The identification of the type of epilepsy and the type of seizures is important as it often influences treatment, outcome, and long term neurological prognosis. View the variety of seizure disorders here.
Negative effects on cognition and physical development, as well as social stigmatization and poor quality of life, are commonly observed in CYE and these children are at higher risk for developmental, intellectual, and mental health comorbidities including attention-deficit/hyperactivity disorder, autism, learning disabilities, depression, and anxiety2,3,4,5 Nutritional insufficiencies have also been cited in CYE. Furthermore, CYE tend to be less active than their peers, even though sports and physical activity are not contraindicated in this group.
According to the National Profile of Childhood Epilepsy and Seizure Disorder; CYE may have ramifications beyond seizures, seizure medications, and co-morbid conditions. The report suggests that CYE may be perceived as “different” by their peers as well as significantly less likely to receive care in a medical home, which leads to a higher risk of having unmet needs for care coordination, medical care, and mental health services. Further, this disparity likely coincides with findings that children and youth from racial and ethnic minorities, as well as lower income families, are disproportionately affected by epilepsy.
The 2012 Institute of Medicine’s (IOM) report Epilepsy Across the Spectrum: Promoting Health and Understanding stated that access for CYE and their families to high-quality health care would require: improved access to pediatric neurologists; a collaborative, patient / family-centered, team-based approach to care; a better informed primary care workforce; public education and awareness; and engagement of numerous stakeholders. Access to CareMany CYE, particularly those in rural and medically underserved areas, do not have access to high-quality coordinated care provided by a medical home or pediatric neurologists. A national shortage of pediatric neurologists and a primary care workforce that may not have the requisite knowledge base and skill sets may exacerbate the difficulty in effectively diagnosing and treating epilepsy1.
The 2009/2010 National Survey of Children with Special Health Care Needs
illustrates that access to pediatric subspecialty care is a significant element of an effective medical home for children with special health care needs; however, access is a multi-faceted problem with many causes: an insufficient number of pediatric subspecialists; dramatically increasing demand for pediatric care; a fragmented and inefficient system of pediatric primary and specialty pediatric care; inadequate financing of medical education and poorly structured payment for clinical care. Some of the consequences of decreased access to subspecialty care include adverse health outcomes as a result of lengthy wait times with delays in making diagnoses and intervention; increased family and child stress and anxiety; and reliance on emergency room services.
Often the evaluation of a child with seizures starts with a primary care physician (PCP) in a medical home or in an emergency room. Then, the child is often referred to a neurologist for further diagnostic evaluation. Treatment and referral patterns for CYE are not uniform or standardized across the country. In some areas, pediatric epilepsy is treated by adult neurologists, even in regions where pediatric neurology care is available. Many families must travel for several hours from rural areas or wait weeks/months for clinic appointments. Diagnostic studies such as an electroencephalogram and neuroimaging studies often require additional travel, which is an added burden to the child (from missing school) and parents (missing days at work).
The Future of Pediatric Education
(FOPE) II Project was a 3-year grant-funded initiative of the AAP to assess the status and future trends of pediatric education. From the inception of the FOPE II Project, it was acknowledged that any discussion of pediatric education and needs must encompass a review of the pediatric workforce. To inform its work, the AAP surveyed 17 of its medical subspecialty and surgical specialty sections. The results were groundbreaking for many subspecialties, and even today, the data generated as a result of those surveys remains some of the only existing data regarding subspecialty workforce issues. A questionnaire was mailed to the members of the Section on Neurology (SONu)
, in addition to US physicians who were members of the Child Neurology Society (CNS), generating a sample size of approximately 900. Though this survey was conducted over 10 years ago, the following key findings continue to be relevant:
- epilepsy was the most common diagnosis among pediatric neurologists’ patients, representing approximately one-third of their total pediatric patient panel.
- eight out of ten pediatric neurologists said they had a special area of expertise within the field, with the most common area of special expertise being epilepsy.
- two thirds of those with special expertise in epilepsy said they acquired such expertise through experience.
- among those pediatric neurologists who experienced a change in the volume or complexity of pediatric referrals, approximately 70% had seen an increase in the volume of referrals and just over one half had seen an increase in the complexity of referrals.
- almost one half of pediatric neurologists anticipated their communities would need additional pediatric subspecialists in the next 3-5 years.
- even in areas or states where there are enough pediatric neurologists for the need, access may still be an issue since for nearly one half of pediatric neurologists, their main practice setting was at a medical school and the primary practice site for three fourths of pediatric neurologists was in an urban area.
- over 90% of pediatric neurologists received referrals for pediatric patients from pediatric generalists and family physicians.
- over 80% received referrals from pediatric medical/surgical subspecialists.
- approximately 60-70% received referrals from urgent care centers, community agencies, and school districts.
The FOPE II Project highlighted that in most urban and suburban settings, pediatric subspecialists care for the majority of CYE with complicated and advanced disease. Because there are few pediatric subspecialists in rural settings, clinical services for patients in these areas are usually provided by periodic outreach clinics, telephone and telemedicine consultation, or referral to local adult subspecialists.Medical Homes
The care and coordination of care of CYE is critically important in their medical homes. Specifically, “people with epilepsy who were racial/ethnic minorities, had low incomes, or were uninsured or insured through public programs (e.g., Medicaid, Medicare) were less likely to receive specialty care and more likely to receive care through generalists
”. Thus, building access to medical homes and the medical home’s knowledge base and skill sets in diagnosing, treating, and supporting CYE is necessary and critical in ensuring patient access to ongoing, high-quality care. Primary care health professionals and medical home teams must know, or have access to, current knowledge about epilepsies, including seizure recognition and diagnosis, prevention strategies and treatment options, co-morbidities, necessary psychosocial services, and the need to counter stigma. The specific educational needs are significant: making the accurate diagnosis; recognizing when referrals to subspecialists are necessary; understanding medication therapies and side effects; and ensuring care coordination and co-management with the specialists. Coordination with schools, and when needed, early intervention, therapies, and other community resources and advocacy groups is another critical component of the medical home. Professional resources can be found here
The co-morbidities of pediatric epilepsy extend beyond the child or adolescent. Epilepsy as a disease may affect the whole family. Some siblings of children with epilepsy have been shown to demonstrate negative feelings towards epilepsy, mostly anxiety or fear about seizures, and a feeling of responsibility towards their affected sibling
. Higher rates of depression
are also reported by mothers of CYE. Schools offer individualized education programs for CYSHCN, including CYE. Safety at school is often a concern requiring supervision on school buses, playgrounds, in the gym, and in swimming pools. Caregivers of CYE must be familiar with safety related to activities for CYE, especially those involving water, as these children have a higher risk of risk of submersion and drowning
.Families as Partners
Education of family members, teachers, and caregivers to recognize seizures and to intervene appropriately when needed is also necessary. CYE need to have a seizure safety plan or a seizure action plan at school, which should be updated annually. Often, support through mental health services is also needed for CYE, particularly to manage co-morbidities such as ADHD, depression, and anxiety. CYE may need pharmacotherapy for these conditions, and therefore management by specialists who are familiar with these and the potential interactions with seizure medications. Family-centered care assures the health and well-being of children and their families through a respectful family-professional partnership which honors the strengths, cultures, traditions, and expertise that everyone - but particularly the family - brings to the relationship. To be most effective, the provision of healthcare for CYE must engage all stakeholders in concert. The patient and family have a role in understanding the importance of a child’s diagnosis of epilepsy. Information for parents and caregivers can be found here
. 1. Ridel KR, Gilbert DL. Child neurology: past, present, and future: part 3: the future. Neurology.2010;75(15):e62-e64
2. Russ SA, Larson K, Halfon N. A national profile of childhood epilepsy and seizure disorder. Pediatrics. 2012;129(2):256-264
3. Oostrom KJ, Smeets-Schouten A, Kruitwagen CL, Peters AC, Jennekens-Schinkel A. Not only a matter of epilepsy: early problems of cognition and behavior in children with ‘‘epilepsy only’’ – a prospective, longitudinal, controlled study starting at diagnosis. Pediatrics. 2003;112(6 Pt 1):1338–1344
4. Dunn DW, Austin JK, Harezlak J, Ambrosius WT. ADHD and epilepsy in childhood. Dev Med Child Neurol. 2003;45(1):50-54
5. Austin JK, Perkins SM, Johnson CS, Fastenau PS, Byars AW, deGrauw TJ, Dunn DW. Behavior problems in children at time of first recognized seizure and changes over the following 3 years. Epilepsy Behav. 2011;21(4):373-381