Prevalence of Developmental Disabilities Among
Children with Epilepsy in Rural Populations
Collaborating Grant Partners
University of Kansas
University of Kansas School of Medicine – Wichita
Columbia University
(1/27/09) 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.
Study Procedures: 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.
