Health Disparities in Epilepsy Planning Panel
November 13, 2002
Rockville DoubleTree Hotel, Rockville, MD
Table of Contents
The purpose of the planning panel was to frame the issues for NINDS regarding disparities in epilepsy, to include the development of an agenda for research, research capacity building, and outreach. The specific tasks were to inform NINDS regarding:
- The occurrence and extent of disparities in epilepsy;
- The nature of the disparities (points of intervention); and
- The array of potential interventions.
The primary outcome of this review of the current state of knowledge was a set of recommendations regarding the next steps to address the identified disparities.
The planning panel was part of the larger health disparities research initiative within NINDS that is designed to reduce or eliminate disparities in the burden of neurological disorders among minorities. The guide for these efforts is the NINDS 5-year Strategic Plan on Minority Health Disparities. In the area of epilepsy, a key goal is to extend the benefits of new knowledge and therapeutic interventions in epilepsy to the entire national community. The planning panel was held to assist in achieving this goal.
The NINDS currently funds approximately 254 extramural grants related to epilepsy, including clinical trials, clinical research, and basic research. The benchmarks for the epilepsy research portfolio - derived from the March 2000 White House-initiated "Curing Epilepsy: Focus on the Future Conference" - include:
- Shifting to the new paradigm of the "Concept of Cure;" and
- Increasing research in targeted areas, including underlying mechanisms of epilepsy, therapies to prevent epilepsy for at-risk patients, and therapies to prevent seizures in patients with epilepsy.
There remains a need for additional programs related specifically to health disparities in epilepsy.
The panel discussions summarized the current state of knowledge on the following topics.
Although the research is relatively sparse, minority populations have a higher frequency of epilepsy than whites. However, minority populations other than African Americans have not been studied to any extent. The reasons for the racial/ethnic differences in the occurrence of epilepsy remain to be identified. Outcomes. There is a dearth of high quality studies related to health disparities in epilepsy outcomes. Endpoints should include both traditional outcomes: disease symptoms, side effects, signs and lab tests/radiographic studies (e.g., drug levels), and patient-centered outcomes, including health-related quality of life (HRQOL). An HRQOL assessment in epilepsy could be made with existing tools.
- Native Americans
Recent data on the number of Native American patients seen for epilepsy per 1,000 persons indicate a high prevalence, more than double that for the United States as a whole. Native Americans with epilepsy experience a number of substantial barriers in their health care that are environmental, social and health system related. These barriers include geographic isolation, poor general living conditions, lack of diagnostic tools, improper recognition of seizures and incorrect diagnoses, misuse of anti-epileptic drugs, lack of translation or interpretation services, distrust of caregivers, and traditional perspectives of epilepsy as having a spiritual rather than medical cause.
Of the 3.2 million Americans with epilepsy, 40 percent are women of childbearing age. Few minority women seem to seek care for epilepsy, which may be due to perceptions about epilepsy in ethnic minority populations that act as barriers to care. Financial barriers also keep women from seeking care. There are several key issues for women with epilepsy. Women with epilepsy cannot safely stop anti-epileptic drug treatment as hormones can exacerbate seizures; pregnant women are at increased risk for seizures (which increase the risk of miscarriage, epilepsy and developmental delay in their children); and, the use of anti-epileptic drugs increases the risk of malformation, anomalies, and neonatal hemorrhage.
- Inner City Populations
Clinical management is a key problem in this population because of the general living environment and community attitudes: limited finances, low education, low expectations of patients by family members; high use of alcohol and other drugs by caretakers; a higher incidence of seizures in other family members. The patients also exhibit poor understanding of, and compliance with, instructions, leading to many unnecessary seizure recurrences and visits to the emergency room. Appointments frequently are not kept, leading to patients presenting with acute seizures. Because patients visit multiple area health care facilities, care is often fragmented and sub-optimal. Additional problems facing this population relate to insurance coverage and access to services.
- Status Epilepticus
Status epilepticus is defined as any seizure that continues for 30 minutes or longer. The incidence of status epilepticus is significantly higher among African American than non-African American populations. In Richmond, VA, the incidence is 57 per 100,000 for African Americans versus 20 per 100,000 for Caucasians. The highest incidence of status epilepticus is in the very young and the elderly-and there is an enormous race disparity in both age groups. Status epilepticus also carries stigma among physicians, who are often reluctant to diagnose it.
There is a lack of research data in the United States on the economics of epilepsy. In epidemiological studies, economic factors have been found to increase the risk of epilepsy. Research on the economic aspects of epilepsy has focused on the cost of care and seizure control, variation in the cost of care over time, the relationship between the cost of care and seizure frequency, the cost-effectiveness of anti-epileptic drugs as mono-therapy and add-on therapy, and the cost-effectiveness of alternative treatments. The importance of clinical and non-clinical factors in the determining the cost of epilepsy needs to be more fully explored to address disparity issues.
There is a clear relationship between stigma and seizure frequency. In the United Kingdom specifically, stigma has been associated with poor quality of care for persons with epilepsy. Stigma in the developing world has a slightly different face. It is characterized by social ostracism, familial "loss of face," lower life chances (educational, sexual activity/marriagability, occupational and financial status, and social isolation), and a large treatment gap (more than 80 percent untreated).
The Panel concluded that additional information on disparities in epilepsy is important for the development of effective intervention programs or campaigns. The highest research priorities were determined to include fuller characterization of racial/ethnic disparities in:
- The epidemiology and outcomes of epilepsy,
- Treatment and clinical management, and
- Patient, family (community) and provider perceptions of epilepsy that function as barriers to care.
In addition, it was recommended that a conceptual framework be developed with which to guide the design of further intervention studies.
- W. Allen Hauser, M.D., Professor of Neurology and Epidemiology, College of Physicians and Surgeons and Mailman School of Public Health, Columbia University (Panel Chairperson)
- Charles Begley, Ph.D., Professor, Management and Policy Sciences, University of Texas School of Public Health
- Robert DeLorenzo, M.D., Ph.D., George Bliley Professor of Neurology, Virginia Commonwealth University
- Ann Jacoby, Ph.D., Professor of Medical Sociology, Department of Primary Care, University of Liverpool
- Annapumi Jayam-Trouth, M.D., Chairperson, Department of Neurology, Howard University
- Karen Parko, M.D., Director, Neurological Services, Northern Navajo Medical Center, Shiprock, NM (Indian Health Service)
- Barbara Vickrey, M.D., M.P.H., Associate Professor, Department of Neurology, University of California, Los Angeles
- Mark Yerby, M.D., Ph.D., Associate Clinical Professor, Department of Public Health and OB-GYN, Oregon Health Science University, North Pacific Epilepsy Research
NINDS Panel Officials:
- Ronnie D. Horner, Ph.D., Program Director, Office of Minority Health and Research, NINDS
- Margaret Jacobs, Program Director, Epilepsy Research, NINDS
- William Theodore, M.D., Chief, Clinical Epilepsy Section, Epilepsy Research Branch, NINDS
- Connie Atwell, Ph.D., Director, Division of Extramural Research, NINDS, NIH
- Susan Axelrod, President, Citizens United for Research in Epilepsy (CURE)
- Jerome Engel, M.D., Ph.D., Professor, Department of Neurology and Neurobiology, School of Medicine, Reed Neurological Research Center, University of California, Los Angeles
- Reuven Ferziger, M.D., Clinical Affairs, Ortho-McNeil, Johnson & Johnson
- Alfred W. Gordon, Ph.D., Associate Director, Office of Minority Health and Research, NINDS
- Edna Kane-Williams, M.A., Vice President, Programs and Research, Epilepsy Foundation
- Meena Hiremath, Ph.D., Program Analyst, Channels, Synapses, and Circuits, NINDS
- Paul Scott, Ph.D., Senior Science Advisor, Office of Science Policy and Planning, NINDS
- Jim Stables, R.Ph., Program Director, Anticonvulsant Screening, NINDS
- David Thurman, M.D., M.P.H., Medical Epidemiologist, National Center for Chronic Disease Prevention, Centers for Disease Control and Prevention