Using an animated video to promote an informed discussion on SUDEP with adolescents.

PURPOSE: The purpose of this study was to create and test an animated video to teach adolescent patients about Sudden Unexpected Death in Epilepsy (SUDEP). METHOD: Thirty-nine patients and thirteen parents watched the SUDEP video and completed at least one survey. Patients with epilepsy aged 14+ and their parents were recruited to watch the video during neurology clinic visits. Parents of minors provided verbal permission for their child to view the video. Participants were asked to complete pre- and post-video surveys. Data analysis included Fischer's exact tests for comparative data and percentages for categorical variables. RESULTS: After watching the SUDEP video, 100% of parents and patients agreed that the video provided helpful knowledge, and 100% of parents and 96% of patients agreed that patients with epilepsy should know about SUDEP. Half of the parents surveyed, and 20% of patients, felt increased concerns after watching the video. Patients rated their understanding of SUDEP significantly higher after watching the video (p < 0.001). CONCLUSION: Participants in this study thought that it was important for patients with epilepsy to know about SUDEP, and all agreed that the animated SUDEP video provided helpful knowledge. While some parents endorsed increased concerns after watching the video, the majority of parents still agreed to allow their child to watch the video. Adolescent education on SUDEP using a family-centered approach may be an important method of encouraging harm-reducing behaviors that can be lifesaving for patients with epilepsy. The standard of practice for SUDEP disclosure should continue to be face-to-face discussion with providers, and we propose this video as a tool to elevate and inform those discussions.

Mental Health Issues in Transition-Age Adolescents and Young Adults With Epilepsy.

Mental health disorders are prevalent in patients with epilepsy, and adolescents are at particularly high risk. The reason for higher rates of anxiety, depression and suicide in young patients with epilepsy is likely multifactorial, and therefore the approach to treatment has proven challenging. In this review, we discuss important mental health topics for adolescents and young adults with epilepsy, as well as evidence for management. In the past several years, advances have been made in the transition of epilepsy care from pediatric to adult providers, creating a promising method for epilepsy patient engagement and empowerment. Future research into the mental health outcomes from these transition programs may lead to better strategies to support young patients with epilepsy.

Pediatric Quality Improvement (QI) Virtual Practicum: Adapting a QI Simulator.

Introduction: Pediatric residencies are expected to arm trainees with skills in quality improvement (QI) that allow trainees to systematically enhance their own practice. Simulation has been shown to be effective in teaching QI, but there are no published QI simulation tools that target pediatric learners. Methods: We adapted a previously developed QI simulation to include a case relevant for pediatric residents. Participants devised interventions using basic QI principles with iterative feedback from facilitators with knowledge of QI methodology. Changes in resident knowledge, attitudes about the curriculum, and depth of engagement in QI were assessed using pre- and posttests, surveys, and assessment of independent QI activities performed prior to graduation, respectively. Results: Eighty-two residents completed the simulation. Of the 76 residents who completed both the pre- and posttests, which each had a total possible score of 28 points, 68% had improved posttest scores, with an average score increase of 2.6 points (SD = 0.6, p < .001). Improvements were most pronounced for residents that scored in the lowest quartile on the pretest. After the simulation, residents reported greater confidence in and likelihood of completing a QI initiative. There was no difference in the level of involvement in future independent QI activities completed by residents who were simulation participants compared with nonparticipants. Discussion: Adapting a previously published QI simulation for pediatric residents was feasible and effective, and the QI simulation was well-liked by learners. Those with lower baseline QI knowledge may have the most to gain from this simulation.

Clinical Implementation of a Parent Questionnaire to Identify Seizures in High-Risk Children.

BACKGROUND: This study evaluated the effectiveness of a parent-completed questionnaire for detecting seizures in high-risk children. METHODS: A 2-part seizure screen for children up to 12 years of age with suspected autism spectrum disorder, developmental delay, or seizure, was implemented in 12 Massachusetts clinics serving populations with high health disparities. Primary care providers and developmental behavioral pediatricians administered part 1, a brief highly sensitive screen. If the result was positive, a research assistant administered part 2, a more detailed screen with higher specificity. Positive part 2 results prompted a specialized assessment by a pediatric neurologist. Screening data were evaluated for detection of seizures or other diagnoses, reason for conducting the screen, and appointment outcomes. Data analysis included chi-squared tests, percentages for categorical variables, and means for numerical data. RESULTS: Of 207 administered seizure questionnaires, 78% of children screened positive on part 1. Of those, 94% of families completed part 2 by telephone, and 64 individuals screened positive. The screen helped to detect 15 new seizure diagnoses and 35 other neurologic diagnoses. Average time to first scheduled appointment was 23.8 days. The no-show rate was 7%. CONCLUSIONS: The seizure questionnaire effectively identified seizures and other disorders in a diverse population of high-risk children. Broader use of this low-cost screening tool could improve access to care for children with suspected seizures, increase seizure recognition, and help allocate resources more effectively.