Prevalence of Developmental Disabilities Among Children with Epilepsy in Rural Populations

September 2, 2008

PI: David Lindeman, PhD, University of Kansas

Abstract

Epilepsy is one of the most common disabling neurological disorders, but there are significant gaps in our knowledge about childhood epilepsy and associated comorbid conditions, including developmental disabilities. The extent to which these disorders exist in rural populations, especially among children, has not been fully assessed. The proposed study will assess the prevalence of epilepsy and secondary disabilities among children in a low-income rural setting. This information is important for policy makers and health care, education, and mental health providers that serve these children in identifying risk factors and planning and providing appropriate services.

Long-Term Goal: To broaden knowledge of the epidemiology of epilepsy and determine the frequency of associated secondary disabilities among children of Midwestern rural, impoverished, predominantly White, low-income populations.

Specific Objectives:

1.  to ascertain all cases of epilepsy among children 0-17 years of age in nine rural Kansas counties. This will be accomplished through case identification, followed by a primary consensus review conducted by two epileptologists and an epidemiologist to determine classification, followed by a family interview to gain additional information on secondary conditions, medical treatment, access to care and quality of life, and then followed by a final consensus review to assimilate all information.
2. to determine how epilepsy is associated with secondary developmental disabilities. This will be accomplished by data analysis establishing an epidemiologic assessment of epilepsy and then associated secondary conditions. Both analyses will include epilepsy types, syndromes, etiologies, assessment of stress and quality of life, and access to and quality of care.

The investigators will use three approaches in identifying cases:

1. Medical records from hospitals, neurological clinics, and other medical facilities will be reviewed for those children identified with epilepsy;
2. Assistance will be sought from special education agencies, mental health facilities, social service agencies, schools, and key community informants in identifying children who are potentially epileptic and who have developmental disabilities,
3. Interviews will be completed with the parents of identified children in order to obtain additional information and/or to seek release of medical record information. Appropriate statistical procedures will be utilized to assure confidence in sample group and data analysis.

Potential Benefits:

1. Information collected may further understanding of the needs for specific interventions and services in the poor rural population with epilepsy and comorbid disabilities;
2. For participants not in the medical system, referral to appropriate sources of care will be provided if desired; and
3. Study personnel will develop expert-reviewed and community-specific "toolkits" of educational materials on epilepsy and developmental disabilities in children for community partners..

This project will provide new/additional information on the number of children with epilepsy and associated health conditions or disabilities in rural communities. The information gained will provide policy makers, health care, education and mental heath professionals with important information for planning health care, education and mental health services. Finally, the project will share information through the development of training materials and provision of training.