Awareness and Access to Care for Children and Youth with Epilepsy

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Executive Summary

In fall 2004, the Department of Health of the District of Columbia undertook a demonstration project, "Awareness and Access to Care for Children and Youth with Epilepsy," with the goal of developing, implementing, and evaluating systems strategies to improve access to information and care for children and youth with epilepsy in underserved areas of the District. The project included as one component a needs assessment, the first ever conducted in the District, to gather information regarding children with epilepsy, with a particular focus on children living in designated Medically Underserved Areas (MUAs). The needs assessment is intended to highlight needed changes within the health services delivery system for children and youth with epilepsy and provide relevant information for strategic planning and development of subsequent activities. It is based on a review of the literature, existing data from Medicaid managed care organizations (MCOs) and on clients in fee- for-service Medicaid, hospital discharge data, a report on interviews with key informants, a report on a survey of school nurses, and findings from focus groups with young adults with epilepsy and caretakers of young adults with epilepsy.

Based on our analysis of Medicaid data (MCO and fee- for-service), we estimate that there are 850 children ages 0 to 21 with epilepsy covered by Medicaid in the District. Prevalence is fairly evenly distributed across age groups. Somewhat less than half (43.8 percent) of Medicaid-enrolled children with epilepsy reside in designated MUAs. The highest geographic concentration of Medicaid-covered children with epilepsy is found in the southeast quadrant of the city.

Key informants, school nurses, and children with epilepsy and their caretakers expressed differing views of the adequacy of the service delivery system. Clients in the system clearly felt that the care they received was good, but also clearly did not have sufficient information for a completely informed judgment. Armed with greater knowledge, providers in the system were better able to see the gaps in care.

In general, children and their caretakers were quite pleased with the care they receive. Enrollees in Health Services for Children with Special Needs were particularly appreciative of the coordination of care that this MCO provides. Staff at Children's National Medical Center and a particular neurologist at Howard University Hospital received high praise. However, focus group participants identified emergency room staff and school nurses as needing a better understanding of epilepsy and how to treat and support children with epilepsy. The findings of the school nurse survey support the need for additional information and/or training for this group.

Key informants viewed the system less favorably, citing several gaps in and barriers to care including the limited availability of pediatric neurologists, restricted MCO formularies for anticonvulsant medications, and cumbersome MCO referral requirements. They were markedly less positive about the care coordination provided by MCOs. The lack of a designated contact at the Department of Health and insufficient coordination and communication across different parts of the system were cited as contributing to inefficiencies. In addition, informants cited lack of knowledge about epilepsy on the part of families and emergency room providers, in particular, as impediments to successful treatment, views corroborated by the focus group findings.

The analysis of hospital data revealed differences in admissions for epilepsy and convulsions between Medicaid clients ages 0 to 21 and clients with other insurance coverage. Admissions for epilepsy and convulsions, an ambulatory care sensitive condition, were about 50 percent higher for Medicaid clients as compared to only 35 percent higher for the reference condition of febrile convulsions, a nonambulatory care sensitive condition. These results suggest possible insufficiencies in ambulatory care services for Medicaid epilepsy clients. The insufficiencies might reflect difficulties in primary care access by Medicaid enrollees, inadequate experience with epilepsy among primary care providers, inadequate access to epilepsy specialists, or poor patient compliance with recommended treatments. Other possible explanations include a greater acuity of disease and more comorbidities among low-income persons and longstanding patterns of emergency room use by Medicaid enrollees.

The final section of the report provides detailed recommendations on improvements that might contribute to a more effective system in the District based on the findings of the needs assessment. The recommendations are specific to the goals identified by the Department of Health under this project:

• Achieve early detection, diagnosis, and treatment of epilepsy
• Improve access to a medical home
• Address the stigma associated with epilepsy
• Identify and address the language and cultural barriers in MUAs
• Develop and implement strategies for sustaining systems change

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Disclaimer: The nonpartisan Urban Institute publishes studies, reports, and books on timely topics worthy of public consideration. The views expressed are those of the authors and should not be attributed to the Urban Institute, its trustees, or its funders.