Objective
To identify and appraise published evidence of the measurement properties for epilepsy‐specific patient‐reported outcome measures (PROMs) of children's health‐related quality of life (HRQoL).
Methods
We searched multiple databases for studies evaluating the measurement properties of English‐language epilepsy‐specific PROMs of children's HRQoL. We assessed the methodological quality using the COnsensus‐based Standards for the selection of health Measurement INstruments (COSMIN) guidance. We extracted data about the content validity, construct validity, internal consistency, test‐retest reliability, proxy reliability, responsiveness, and precision, and assessed the measurement properties with reference to standardized criteria.
Results
We identified 27 papers that evaluated 11 PROMs. Methodological quality was variable. Construct validity, test‐retest reliability, and internal consistency were more commonly assessed. Quality of Life in Childhood Epilepsy (QoLCE) questionnaires are parent‐reported and evaluated more than other PROMs; QoLCE‐55 has good and replicated evidence for structural and construct validity and internal consistency. Health‐Related Quality of Life Measure for Children with Epilepsy (CHEQoL) has both child and parent‐reported versions and good evidence of content, structural, and construct validity.
Significance
This review identified two leading candidate epilepsy‐specific PROMs for measuring health‐related quality of life in children. Establishing evidence of the responsiveness of PROMs is a priority to help the interpretation of meaningful change scores.
College students' motivations have shifted from more intrinsic to more extrinsic across time. To meet students' needs and goals and to adhere to the American Psychological Association's (APA) best practice guidelines, psychology professors should speak to the acquisition of job-relevant skills in their courses, especially in classes that students tend not to favor like psychology statistics and research methods. Utilizing a descriptive, mixed-methods approach, a psychology statistics professor incorporated a skills-based syllabus section and skills emphasis in her course over a 2-year span. Across six small course sections, psychology statistics students (N = 58) provided evaluations of the instructor, course, and benefits of the syllabus and course for helping them to understand and describe the skills they acquired in the course to employers and graduate schools. Student perceptions of the relevance and effectiveness of the syllabus increased significantly after rereading the skills-based syllabus section at the course's end. From the narrative responses, three primary themes emerged: instructor behavior, course organization and content, and professional application and development. Our data suggest that introducing students' skill sets orally and in writing on the first day-and repeating them periodically during the course-can be important for student development. Discussing skills should continue across the semester to maximize student growth, educational engagement, and postgraduation opportunities. The benefit of this nonexperimental, applied pilot study is primarily heuristic; it provides future researchers with preliminary findings that can serve as a foundational step in the future implementation of more rigorous experimental designs.
Introduction Sleep and epilepsy have an established bi-directional relationship yet only one randomised controlled clinical trial has assessed the effectiveness of behavioural sleep interventions for children with epilepsy. The intervention was successful, but delivered via face-to-face educational sessions with parents, which are costly and non-scalable to population level. The Changing Agendas on Sleep, Treatment and Learning in Epilepsy (CASTLE) Sleep-E trial addresses this problem by comparing clinical- and cost-effectiveness in children with Rolandic epilepsy between standard care and standard care augmented with a novel, tailored parent-led CASTLE Online Sleep Intervention (COSI) that incorporates evidence-based behavioural components.
Methods and analyses CASTLE Sleep-E is a UK-based, multi-centre, open label, randomised, parallel-group, pragmatic superiority trial. A total of 110 children with Rolandic epilepsy will be recruited in out-patient clinics and allocated 1:1 to standard care (SC) or standard care augmented with COSI (SC + COSI). Primary clinical outcome is parent-reported sleep problem score (Children's Sleep Habits Questionnaire). Primary health economic outcome is the Incremental Cost Effectiveness Ratio (National Health Service and Personal Social Services perspective, Child Health Utility 9D instrument). Parents and children (>=7 years) can opt into qualitative interviews and activities to share their experiences and perceptions. Jointly, the qualitative trial component and the COSI system (e-analytics and evaluation module) will provide information for a process evaluation (context, implementation, and mechanisms of impact).
Ethics and dissemination The CASTLE Sleep-E protocol was approved by the Health Research Authority East Midlands - Nottingham 1 Research Ethics Committee, reference: 21/EM/0205. Trial results will be disseminated to scientific audiences, families, professional groups, managers, commissioners, and policy makers. Pseudo-anonymised Individual Patient Data will be made available after dissemination on reasonable request.
Registration details ISRCTN registry (Trial ID: ISRCTN13202325, prospective registration 09/Sep/2021). See Supplemental Table 1 for the World Health Organisation Trial Registration Data Set (Version 1.3.1).
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