1 40 1 Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource April 2018 List Text A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text. Citation List Month April 2018 List URL Address <a href="http://doi.org/10.1016/j.yebeh.2018.01.003" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.yebeh.2018.01.003</a> Dublin Core The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/. Title A name given to the resource Assessing the impact of caring for a child with Dravet syndrome: Results of a caregiver survey Publisher An entity responsible for making the resource available Epilepsy & Behavior Date A point or period of time associated with an event in the lifecycle of the resource 2018 Subject The topic of the resource Caregivers; Child; Child Care; Only Child; Dravet syndrome; child; Caregiver burden; EuroQoL 5D-5L; Oberst Caregiving Burden Scale; Supportive services; Epilepsies; Myoclonic Creator An entity primarily responsible for making the resource Campbell JD; Whittington MD; Kim CH; VanderVeen GR; Knupp KG; Gammaitoni A Description An account of the resource OBJECTIVE: The objective of this study was to describe and quantify the impact of caring for a child with Dravet syndrome (DS) on caregivers. METHODS: We surveyed DS caregivers at a single institution with a large population of patient with DS. Survey domains included time spent/difficulty performing caregiving tasks (Oberst Caregiving Burden Scale, OCBS); caregiver health-related quality of life (EuroQoL 5D-5L, EQ-5D); and work/activity impairment (Work Productivity and Activity Impairment questionnaire, WPAI). Modified National Health Interview Survey (NHIS) questions were included to assess logistical challenges associated with coordinating medical care. RESULTS: Thirty-four primary caregivers responded, and 30/34 respondents completed the survey. From OCBS, providing transportation, personal care, and additional household tasks required the greatest caregiver time commitment; arranging for child care, communication, and managing behavioral problems presented the greatest difficulty. EuroQoL 5D-5L domains with the greatest impact on caregivers (0=none, 5=unable/extreme) were anxiety/depression (70% of respondents>/=slight problems, 34%>/=moderate) and discomfort/pain (57% of respondents>/=slight problems, 23%>/=moderate). The mean EQ-5D general health visual analogue scale (VAS) score (0=death; 100=perfect health) was 67 (range, 11-94). Respondents who scored <65 were two- to fourfold more likely to report >/=moderate time spent and difficulty managing child behavior problems and assisting with walking, suggesting that children with DS with high degrees of motor or neurodevelopmental problems have an especially high impact on caregiver health. On the WPAI, 26% of caregivers missed >1day of work in the previous week, with 43% reporting substantial impact (>/=6, scale=1-10) on work productivity; 65% reported switching jobs, quitting jobs, or losing a job due to caregiving responsibilities. National Health Interview Survey responses indicated logistical burdens beyond the home; 50% of caregivers made >/=10 outpatient visits in the past year with their child with DS. CONCLUSIONS: Caring for patients with DS exerts physical, emotional, and time burdens on caregivers. Supportive services for DS families are identified to highlight an unmet need for DS treatments. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1016/j.yebeh.2018.01.003" target="_blank" rel="noreferrer noopener">10.1016/j.yebeh.2018.01.003</a> Rights Information about rights held in and over the resource Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s). 2018 April 2018 List Campbell JD Caregiver Burden Caregivers Child Child Care Dravet Syndrome Epilepsies Epilepsy & Behavior EuroQoL 5D-5L Gammaitoni A Kim CH Knupp KG Myoclonic Oberst Caregiving Burden Scale Only Child Supportive services VanderVeen GR Whittington MD