Role of the Primary Care Provider
Primary care providers serve as a bridge for patients who need referrals to epilepsy specialists.
The Primary Care Providers (PCP) role in treating and managing seizures and comorbidities
In the United States, high-quality primary care is essential for people with epilepsy, inasmuch as only 17 percent of those with new-onset epilepsy see a neurologist, and primary care physicians provide most of the day-to-day care and treatment for about 40 percent of epilepsy patients.55 Additionally, 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.55 This emphasizes the importance of high-quality epilepsy care in primary care settings and the importance of these providers having sufficient knowledge about diagnosing, treating, and referring patients with epilepsy to specialty care when needed.55
When seeing a patient who has experienced a seizure, the PCP should conduct a thorough review of the patient’s history; a neurological exam; and a physical exam including complete blood work and an electrocardiogram (ECG).60 A referral to general neurology or to an epileptologist at a comprehensive epilepsy center will allow the patient to reach the needed level of care as quickly as possible, if needed.
According to guidelines from National Association of Epilepsy Centers (NAEC), it is recommended that the initial treatment for a patient who has experienced seizures be provided by the PCP by prescribing an antiepileptic drug (AED).60 Referral to neurology for further evaluation is warranted and should be done if seizures have not arrested within three months of beginning AED.60
Once that initial referral has been made and the patient is being seen by a neurologist, the PCP should remain an integral member of the epilepsy healthcare team, because he or she will probably see the patient for other issues or routine care while the patient is under the neurologist’s care.60
Primary Care providers are often the first line of defense when a child has experienced a seizure. While most pediatric neurologists often have high wait times or may not be accessible to the family, even when a referral is initiated, primary care providers can prescribe AEDs and manage and related comorbidities.
For more resources, visit Caring for Children and Youth with Epilepsy: What Primary Care Providers Need to Know Webinar Series: The series will aim to close the gap in knowledge and capacity in diagnosing, treating, and managing seizures and comorbidities by educating primary care providers through 10 webinar sessions.
Gaps in care
Data from the National Survey of Children's Health (NSCH)demonstrate that only 39% of US children between the ages of 0-17 years’ experience a baseline of quality care predicated on three essential system performance measures: adequate insurance, coordinated care within a medical home, and at least one annual preventative health care.57
Based on the 2011/12 NSCH, 5.5% of children lack health insurance and a total of 11.3% were either uninsured or had periods of no coverage during the year at the time of the survey.57 Children in low-income households are more likely than children in higher-income households to have experienced a gap in health insurance in the past year.61,62
Children with Special Health Care Needs
Approximately 14.6 million children ages 0–17 years in the United States (19.8%) have special health care needs.57 Children and Youth with Special Health Care Needs (CYSHCN), are defined as “those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally.”58 These children have a need for increased health care access, health promotion activities, and overall life stress reduction throughout the life course. While 65% of CYSHCN experience more complex service needs that go beyond a primary need for prescription medications to manage their health condition,57 only 43% of those receive ongoing, coordinated, comprehensive care within a medical home.59
The number of child neurologists in the U.S. is estimated to be at least 20% below the national needs, although many believe that this is a conservative estimate.54 According to the 2018 American Academy of Neurology Insight Reports, there are only 1,327 child neurologists in the United States. The result is limited access to care for children and youth, especially in rural and underserved communities.53
AIM-ET is a quality improvement project that improves access and clinical outcomes for children and youth with epilepsy by partnering Pediatric neurologists with pediatricians in rural or underserved areas to provide care via telehealth.
Due to the limited number of pediatric neurologists, the American Academy of Pediatrics’ National Coordinating Center for Epilepsy is building capacity of primary care providers to diagnose, treat, and manage children and youth with epilepsy, through a webinar series Caring for Children and Youth with Epilepsy: What Primary Care Providers Need to Know. Project ECHO aims to connect providers to build capacity to provide care using a telementoring program.
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References for this page can be found here.
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.