ABSTRACT
OBJECTIVES: Seizure action plans help patients and caregivers better self-manage their epilepsy. We hypothesized that providing pediatric patients and their caregivers with a seizure action plan would reduce unplanned health care utilization and decrease the impact of epilepsy. METHODS: We developed a seizure action plan for use in pediatric epilepsy patients. A prospective cohort was randomly assigned to receive a seizure action plan in addition to standard epilepsy care or to standard epilepsy care alone. All caregivers were surveyed using the Modified Impact on Families (MIF) questionnaire at enrollment, 3 months, and 12 months. Health care utilization measures and Modified Impact on Families questionnaire scores were compared between the 2 groups. RESULTS: Fifty-four patients received a seizure action plan and standard care, whereas 48 received standard care alone. The groups had similar demographics. There was a significantly higher proportion of overall clinic appointment no shows in the standard care group vs the seizure action plan group (P = .04); however, other significant differences in health care utilization were not found. Among patients with low seizure frequency (12 or fewer seizures per year), Seizure comfort scores on the Modified Impact on Families questionnaire were significantly higher at 12 months among the seizure action plan group compared to the standard care group. SIGNIFICANCE: Caregivers for patients with epilepsy receiving a seizure action plan were more comfortable regarding seizure care and missed fewer appointments. However, differences in health care utilization were not present. The seizure action plan appears to have more impact in patients who experience lower seizure frequencies. Further studies evaluating the impact as well as assessing caregivers' perceptions of the seizure action plan using a larger sample are needed.
Subject(s)
Epilepsy , Patient Acceptance of Health Care , Quality of Life , Seizures , Adolescent , Caregivers , Child , Female , Humans , Male , Prospective Studies , Surveys and QuestionnairesABSTRACT
The Early Literacy Screener (ELS) is a brief screen for emergent literacy delays in 4- and 5-year-olds. Standard developmental screens may also flag these children. What is the value of adding the ELS? Parents of children aged 4 (n = 45) and 5 (n = 26) years completed the Ages and Stages Questionnaire-3 (ASQ-3), the Survey of Well-Being in Young Children (SWYC), and the ELS. Rates of positive agreement (PA), negative agreement (NA), and overall agreement (Cohen's κ) across the various screening tools were calculated. Early literacy delays were detected in 51% of those who passed the ASQ and 38% of those who passed the SWYC. For ELS versus ASQ, κ = 0.18, PA = 0.36 (95% CI = 0.23-0.51), and NA = 0.83 (95% CI = 0.66-0.92). For ELS versus SWYC, κ = 0.42, PA = 0.61 (95% CI = 0.45-0.75), and NA = 0.82 (95% CI = 0.65-0.92). The ELS adds value by flagging early literacy delays in many children who pass either the ASQ-3 or SWYC.
