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OBJECTIVE: Pediatric epilepsy is often associated with diminished health-related quality of life (HRQOL). Our aim was to establish the validity of the Pediatric Epilepsy Learning Healthcare System Quality of Life (PELHS-QOL-2) questions, a novel two-item HRQOL prompt for children with epilepsy, primarily for use in clinical care. METHODS: We performed a multicenter cross-sectional study to validate the PELHS-QOL-2. Construct validity was established through bivariate comparisons with four comparator measures and known drivers of quality of life in children with epilepsy, as well as by creating an a priori multivariable model to predict the Quality of Life in Childhood Epilepsy Questionnaire (QOLCE-55). Validity generalization was established through bivariate comparisons with demographic and clinical information. Content validity and clinical utility were established by assessing how well the PELHS-QOL-2 met eight design criteria for an HRQOL prompt established by a multistakeholder group of experts. RESULTS: The final participant sample included 154 English-speaking caregivers of children with epilepsy (mean age = 9.7 years, range = .5-18, 49% female, 70% White). The PELHS-QOL-2 correlated with the four comparator instruments (ρ = .44-.56), was significantly associated with several known drivers of quality of life in children with epilepsy (p < .05), and predicted QOLCE-55 scores in the multivariate model (adjusted R2 = .54). The PELHS-QOL-2 item was not associated with the age, sex, and ethnicity of the children nor with the setting and location of data collection, although PELHS-QOL-Medications was significantly associated with race (worse for White race). Following both quantitative and qualitative analysis, the PELHS-QOL-2 met seven of eight design criteria. SIGNIFICANCE: The PELHS-QOL-2 is a valid HRQOL prompt and is well suited for use in clinical care as a mechanism to routinely initiate conversations with caregivers about quality of life in children with epilepsy. The association of PELHS-QOL-Medications with race merits further study.
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Epilepsia , Sistema de Aprendizagem em Saúde , Adolescente , Criança , Pré-Escolar , Estudos Transversais , Epilepsia/tratamento farmacológico , Feminino , Humanos , Masculino , Qualidade de Vida , Inquéritos e QuestionáriosRESUMO
INTRODUCTION: Adherence is suboptimal in adolescents with epilepsy. Social norms comparison (i.e., feedback about someone else's behavior related to one's own behavior) strategies may be beneficial in improving medication adherence. Using a novel model of behavioral intervention development, the aim of the current study was to create a social norms intervention for adolescents with epilepsy via focus groups and usability studies. METHODS: A focus group, individual interviews, short-term usability, and extended usage testing studies were conducted. Across all study phases, content and images of intervention components were displayed to participants as mock-ups in PowerPoint slide decks. After each phase, updated iterations were shown to participants to refine the intervention. Several questionnaires were completed by adolescents and caregivers to characterize the samples. RESULTS: Twelve adolescents participated in the focus group/individual interviews and usability studies. The final Behavioral Economic Adherence for Teens (BEAT) intervention consists of a text messaging system and a graphical user interface. General feedback indicated the need for simplicity and ease of use regarding obtaining the graphical messages (e.g., no extra login and passwords); engaging visual images; and weekly comparisons of a target patient's medication adherence to other adolescents' performance. The average system usability system (SUS) rating was 88.3â¯+â¯3.8. CONCLUSIONS: Our final intervention had high usability ratings and was perceived as engaging and easy to understand. An important next step is to test the BEAT intervention in a Phase 2 randomized trial.
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Epilepsia , Envio de Mensagens de Texto , Adolescente , Cuidadores , Epilepsia/tratamento farmacológico , Grupos Focais , Humanos , Adesão à Medicação , Normas SociaisRESUMO
Background and Objectives: The American Academy of Neurology has developed quality measures related to various neurologic disorders. A gap exists in the implementation of these measures in the different health care systems. To date, there has been no electronic health care record nor implementation of quality measures in Antigua. Therefore, we aimed to increase the percent of patients who have epilepsy quality measures documented using standardized common data elements in the outpatient neurology clinic at Sir Lester Bird Medical Center from 0% to 80% per week by June 1, 2022 and sustain for 6 months. Methods: We used the Institute for Health care Improvement Model for Improvement methodology. A data use agreement was implemented. Data were displayed using statistical process control charts and the American Society for Quality criteria to determine statistical significance and centerline shifts. Results: Current and future state process maps were developed to determine areas of opportunity for interventions. Interventions were developed following a "Plan-Do-Study-Act cycle." One intervention was the creation of a RedCap survey and database to be used by health care providers during clinical patient encounters. Because of multiple interventions, we achieved a 100% utilization of the survey for clinical care. Discussion: Quality improvement (QI) methodology can be used for implementation of quality measures in various settings to improve patient care outcomes without use of significant resources. Implementation of quality measures can increase efficiency in clinical delivery. Similar QI methodology could be implemented in other resource-limited countries of the Caribbean and globally.
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Background and Objectives: Folic acid is an important supplement to take for women with epilepsy on antiseizure medications (ASMs). Determination of baseline counseling given to women with epilepsy and the association with folic acid being recommended were evaluated. Factors surrounding the association were reviewed. Methods: An exploratory retrospective review of women with epilepsy seen at a large Midwestern pediatric institution was performed between January 2018 and January 2020. Results: Patients who received preconception counseling were more likely to be given a recommendation to take folic acid. Patients on more than 1 ASM were likely to receive counseling. Patient age and race were associated with having folic acid recommended. Discussion: Providing preconception counseling for women with epilepsy is associated with an increased recommendation and prescription of folic acid. Further evaluation into possible disparities to receiving a folic acid recommendation is needed.
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Currently, the tracking of seizures is highly subjective, dependent on qualitative information provided by the patient and family instead of quantifiable seizure data. Usage of a seizure detection device to potentially detect seizure events in a population of epilepsy patients has been previously done. Therefore, we chose the Fitbit Charge 2 smart watch to determine if it could detect seizure events in patients when compared to continuous electroencephalographic (EEG) monitoring for those admitted to an epilepsy monitoring unit. A total of 40 patients were enrolled in the study that met the criteria between 2015 and 2016. All seizure types were recorded. Twelve patients had a total of 53 epileptic seizures. The patient-aggregated receiver operating characteristic curve had an area under the curve of 0.58 [0.56, 0.60], indicating that the neural network models were generally able to detect seizure events at an above-chance level. However, the overall low specificity implied a false alarm rate that would likely make the model unsuitable in practice. Overall, the use of the Fitbit Charge 2 activity tracker does not appear well suited in its current form to detect epileptic seizures in patients with seizure activity when compared to data recorded from the continuous EEG.