Clinicians

​​NATIONAL COORDINATING CENTER for EPILEPSY

Clinicians

 
 

​Primary care health professionals and medical home teams must know, or have access to, current knowledge about epilepsy, 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. The Academy offers a variety of resources that address caring for a child with epilepsy: 

Patient Handouts
Seizures and Epilepsy

Policy Statements
Referral to Pediatric Surgical Specialists (provides guidance on when to refer to a pediatric neurosurgeon)
Prevention of Drowning (children with epilepsy are at a greater risk of drowning)
Febrile Seizures: Clinical Practice Guideline for the Long-term Management of the Child With Simple Febrile Seizures
Treatment of the Child with a First Unprovoked Seizure (AAP endorsed)
Patient-and Family-Centered Care Coordination: A Framework for Integrating Care for Children and Youth Across Multiple Systems (Care coordination addresses family-centered care, calls for partnership across systems, and emphasizes quality and cost outcomes. The Pediatric Care Coordination Curriculum is an online resource that helps practices implement the recommendations in this AAP policy statement).
Rescue Medicine for Epilepsy in Education Settings (clinical report)

​Articles
Mortality Risks in New-Onset Childhood Epilepsy
(Pediatrics 2013) OBJECTIVES: Estimate the causes and risk of death, specifically seizure related, in children followed from onset of epilepsy and to contrast the risk of seizure-related death with other common causes of death in the population.

Memory and Health-related Quality of Life in Severe Pediatric Epilepsy (Pediatrics 2013) OBJECTIVES: The purpose of this paper was to investigate the contributions of sociodemographic, neurologic, and neuropsychological variables to health-related quality of life (HRQoL) in children with epilepsy and high seizure burden. Focus was placed on the relationship between memory and HRQoL, which has not been previously investigated.

Psychiatric and Medical Comorbidity and Quality of Life Outcomes in Childhood-Onset Epilepsy (November 2011) OBJECTIVE: We compared associations of epilepsy remission status and severity as well as psychiatric and other comorbidities with child and parent-proxy reports of health-related quality of life (HRQoL) in adolescents previously diagnosed with epilepsy.

Evaluation of Learning Difficulties in Epileptic Children with Idiopathic Generalized Epilepsy and Well-Controlled Seizures (Supplement to Pediatrics 2008) OBJECTIVE: Our goal was to evaluate LDs in epileptic children

Behavioral and Emotional Problems in Children with Idiopathic Epilepsy and Well-Controlled Seizures (Supplement to Pediatrics 2008) OBJECTIVE: The aim of this study was to evaluate behavioral and emotional problems in children with idiopathic epilepsy and well-controlled seizures (without seizures for at least 6 months) and to investigate whether specific problems are associated with specific medical epilepsy-related factors.

Spa-Drain Entrapment Complicated by Suspicions of Nonaccidental Trauma and Epilepsy Onset (Case Report, 2011)

Toward an Integrated Public Health Approach for Epilepsy in the 21st Century (August 2014) This article summarizes recent federally supported activities promoting an integrated public health approach for epilepsy, highlighting progress in response to the landmark 2012 IOM report and identifying opportunities for continued public health action.

Coding and Payment
Coding Fact Sheets
Private Payer Advocacy

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).

 AAP Resources