Abstracts

In a sample of caregivers of children with epilepsy and significant learning problems, we noted that some caregivers gave accounts of a prompt diagnosis of epilepsy, while others described a delay. The purpose of this pilot study was to answer the research question: What factors are associated with a delay to a diagnosis of epilepsy in children with both a seizure disorder and learning problems?, Qualitative data from twenty retrospective, open ended interviews with primary caregivers of children who had both a diagnosis of epilepsy and significant learning problems were examined for presence or absence of factors. Interviews were dichotomized into two categories: those that described a timely diagnostic process, and those that told of a delay. The qualitative data were then coded as to the presence or absence of factors. These included: annual income greater than $30,000, both parents actively involved with the child, parental college education, generalized tonic/clonic seizures as the presenting seizure type, caregiver mention of child fever or febrile seizures, and a diagnosis of developmental delay prior to diagnosis of epilepsy. Child age at diagnosis was also noted. SPSS was used to describe the data and conduct logistic regression analysis to explore for associations between presence/absence of factors and age of child with delay to diagnosis., Of the twenty caregivers, 11 described the diagnostic process as prompt, while 9 regarded it as delayed. Older child age at diagnosis was found to associate with the delayed group, ([italic]p[/italic] = .05). Three of the dichotomous factors described above were significantly associated with group membership (delay to diagnosis versus prompt diagnosis): some college education of at least one parent/caregiver ([italic]p[/italic] = .02), generalized tonic/clonic seizure as the presenting seizure type ([italic]p[/italic] = .04), and a diagnosis of developmental delay prior to diagnosis of epilepsy ([italic]p[/italic] = .04)., While our pilot study utilized a small sample, our findings suggest that delay to diagnosis might be associated with child, parent and seizure factors. Our sample was too small to conduct multifactor logistic regression analyses which would allow us to explore the influence of factors in combination. Our goal is to conduct a larger study with a more diverse sample in order to explore combinations of factors that are associated with an increased risk for delay to a diagnosis of epilepsy., (Supported by the Center for Enhancing Quality of Life in Chronic Illness at Indiana University School of Nursing and by R01 NR04536 and a supplement from the Office of Rare Diseases to Joan .K.Austin.)