Abstracts

Rationale: To investigate the prevalence and factors that lead to caregiver anxiety associated with admission to the Pediatric Epilepsy Monitoring Unit (PEMU) in order to improve preadmission education. Methods: A prospective study of all patients admitted to the PEMU at our pediatric epilepsy center over a 9 mos period, using a deindentified questionnaire developed for the purpose of this study. The questionnaire focused on both preadmission and inpatient nursing and physician communication about both the technical aspects of the monitoring and their child's condition. The questionnaire had both a fixed and free response section. Institutional IRB approval was obtained. Results: During the testing period, 249 patients were admitted to the PEMU and provided the questionnaire. The age range was <1 to 21 years of age (mean 9 yrs); 114(46%)were males, and 135(54%) were females. We had 100(43%)responders. Of these, 40% had epilepsy, and 81% were monitored for 1-3 days(mean 2.8 days). 56% had other neurological conditions, and 54% had other chronic medical conditions. 88% had previous EEG experience. 55% had a decrease in their anti-epileptic drugs (AEDs) while admitted, and 68% were discharged on more AEDs. 68% of the caregivers identified a degree of anxiety, and 17% identified themselves as "very anxious." 46% of responders felt they were not optimally prepared, and identified this as a cause of anxiety. For 38%, not having a seizure during monitoring was identified as a source of anxiety. 32% identified either staying in the hospital or being away from home as the cause of their anxiety. Caregivers felt that nursing and physican communication was comparable: 93% and 86%, respectively. From the free response section of the questionaire, identified areas of improvement include: improved accomodation for children with autism spectrum disorders(12%), improved preadmission education and expectations of the stay, and clarification of caregiver role during the monitoring. Conclusions: We have identified the prevalence of anxiety associated with the PEMU experience as well as causative factors. We plan to reexamine patients after undertaking steps to improve the preadmission communication between nursing and families, partner more closely with child life, and focus on care of patients with autism spectrum disorder. Successful interventions can not only serve as models for other PEMU centers, but form common goals for quality improvement in a network of pediatric epilespy centers.