The AAP believes the "medical home" is an important aspect of caring for children while delivering advanced "primary care with the goal of addressing and integrating high quality health promotion, acute care and chronic condition management in a planned, coordinated, and family-centered manner".
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 such as:
- 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
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 to 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).
Care and coordination of care of CYE are critically important in their medical homes, particularly for populations of racial/ethnic minorities and living in medically underserved areas. Improving access to medical homes and the medical home knowledge base and skill sets in diagnosing, treating, and supporting CYE is necessary and critical in ensuring patient access to ongoing, high-quality care.
For more information about medical homes, see the Caring for Children with Epilepsy: What Primary Care Providers Need to Know April 11, 2019 webinar session or visit the AAP National Resource Center for Patient/Family-Centered Medical Home.
This project is supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant number U23MC26252, Awareness and Access to Care for Children and Youth with Epilepsy/ cooperative agreement. This information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.