Abstracts

Rationale: Epilepsy is a complex diagnosis with significant ramifications on quality of life in both the patient and families. Information at seizure onset and in the early stages of epilepsy have been found to be efficacious. When patients come into the hospital or clinic with epilepsy related concerns, we have theorized that there would be benefit from the health care providers assessing their level of knowledge of their child’s diagnosis. There was a debate about the utility of a seizure checklist and how it would be received by parents. Currently, Dell Children's Medical Center does not have a consistent, efficient method of tracking seizure and Epilepsy education at time of diagnosis throughout the compendium of the disease. We surveyed other facilities that had such tools and modified them for our use, primarily the checklist from the Ontario Epilepsy Implementation Task Force. Our goal is to assess and improve the level of education of our most important primary stakeholders, our patients and their parents.

Methods: We surveyed two different categories of patients with an epilepsy diagnosis: those diagnosed with epilepsy for less than 6 months and those diagnosed for greater than 6 months. Both groups of families were interviewed about their opinions on our “Seizure Education Checklist” and asked the following questions: “Would you use this checklist to keep track of epilepsy education? Would you take it to further appointments? If you would not use it now, would you use it later if your child’s treatment, medication, or diagnosis changed? If your child had a new diagnosis of epilepsy, what would you like to add or how would you change this form?”

Results: We found that out of the 38 families that were surveyed, 37 of them would use this tool to keep track of continuing education of their child’s diagnosis. Respondents from both groups spoke positively about the utility of the questionnaire. Some of the feedback obtained was, “This would have been useful to get when he was first diagnosed,” and “Looks good, it has all the things that I forget to ask, very helpful.” Multiple recommendations to add sections on “parent/family support” indicates a greater need for education on these topics. Recommendations to add a section on “water safety” and “epilepsy surgeries,” both came up only once, which might indicate lack of insight into these areas with our stakeholders. Over 20 additional categories of education/needs were identified.

Conclusions: These families spoke favorably of the questionnaire and assured us of its value. They also critically reviewed the questions and gave valuable critique of questions and how it could be best utilized. We updated the checklist based on their feedback and will continue to survey stakeholders, including families, patients and providers. This research will help our families feel more empowered and equipped to handle the intricacies of an epilepsy diagnosis.

Funding: Please list any funding that was received in support of this abstract.: No funding that was received in support of this abstract.