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APHA Scientific Session and Event Listing

Donna R. Doherty, MS, RN, Shihfen Tu, PhD, Kathryn J. Schilmoeller, PhD, and Gary L. Schilmoeller, PhD. College of Education and Human Development, University of Maine, Corbett Hall, Orono, ME 04469, 207-581-9064, shihfen.tu@umit.maine.edu

Current research on agenesis of the corpus callosum (ACC), a congenital brain malformation, is often drawn from clinical populations, includes a small sample size, and/or lacks a comparison group. Additionally, health-related issues likely to affect the daily health and living of persons with ACC are rarely considered. The purpose of this study was to explore and compare the prevalence and expression of specific health-related variables in a large survey sample of persons with ACC (N=189) and their siblings (N=189). The use of a comparison group of siblings helps to control for family history and environment. Descriptive analyses included concurrent diagnoses, physical features, neurological and sensory information, feeding, elimination, and sleep concerns, and some behavioral features. Compared to their siblings, individuals with ACC had a significantly higher rate of being diagnosed with developmental delay, mental retardation, learning disability, seizure disorders, hydrocephaly, cerebral palsy, and microcephaly. In addition, individuals with ACC had more sensory deficits and abnormalities, including problems with depth perception, strabismus, near-and-far- sightedness, and hearing loss second to repeated ear infections. Respondents indicated more children with ACC display inadequate sucking at birth, difficulties with chewing and swallowing, and more elimination problems including delayed toilet training. For children over the age of 5 years, those with ACC were more likely to have sleep difficulties, including getting to sleep and sleeping through the night. One finding with important consequences for health care providers results from reports of reduced sensitivity to pain in persons with ACC (56.2% reported less than normal or little pain perception). These data support anecdotal reports of children with ACC who do not cry or complain in response to injury or illness. This study raises important questions for future research on health-related concerns for persons with ACC. In addition, the results suggest the need for increased vigilance on the part of healthcare professionals caring for this population and for information to educate parents and caregivers.

Learning Objectives:

• To identify physical and behavioral patterns in individuals with agenesis of the corpus callosum (ACC)
• To identify altered patterns of feeding, elimination,sleep, and pain perception in individuals with ACC
• To translate the implications of health-related issues in individuals with ACC for caregivers and other non-health professionals

Keywords: Disability,

Presenting author's disclosure statement:

Not Answered