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 as36:
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).
Potential Consequences to Decreased Access to Subspecialty Care:
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.
Primary care health professionals and medical home teams must know, or have access to:
Current knowledge about epilepsies including:
Necessary psychosocial services for patients
Resources to help patients and their families counter stigma
The specific educational needs for primary care health professionals are significant including:
Understanding how to make an accurate diagnosis
Recognizing when referrals to subspecialists are necessary
Understanding medication therapies and side effects
Ensuring care coordination and co-management with the specialists
Additionally, coordination with schools, and when needed, early intervention, therapies, and other community resources and advocacy groups is another critical component of the medical home.
For more information and resources about medical homes, visit the AAP National Center for Medical Home Implementation.
References for this page can be found here.
The Coordinating Center is a cooperative agreement between the Maternal and Child Health Bureau (MCHB) and the American Academy of Pediatrics (AAP) to establish a multifaceted community-based system of care that ensures that Children and Youth with Epilepsy (CYE) have access to the medical, social, and other supports and services that they require to achieve optimal health outcomes and improved quality of life. This Web site is funded by the US Department of Health and Human Services (HHS), Health Resources and Services Administration (HRSA).