{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,2,14]],"date-time":"2026-02-14T20:56:04Z","timestamp":1771102564930,"version":"3.50.1"},"reference-count":35,"publisher":"Georg Thieme Verlag KG","issue":"01","funder":[{"name":"Digital Health Solutions, LLC"},{"DOI":"10.13039\/100006457","name":"Child Neurology Foundation","doi-asserted-by":"crossref","id":[{"id":"10.13039\/100006457","id-type":"DOI","asserted-by":"crossref"}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Appl Clin Inform"],"published-print":{"date-parts":[[2021,1]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:p>\n          Background\u2003Sudden unexpected death in epilepsy (SUDEP) is a rare but fatal risk that patients, parents, and professional societies clearly recommend discussing with patients and families. However, this conversation does not routinely happen.<\/jats:p><jats:p>\n          Objectives\u2003This pilot study aimed to demonstrate whether computerized decision support could increase patient communication about SUDEP.<\/jats:p><jats:p>\n          Methods\u2003A prospective before-and-after study of the effect of computerized decision support on delivery of SUDEP counseling. The intervention was a screening, alerting, education, and follow-up SUDEP module for an existing computerized decision support system (the Child Health Improvement through Computer Automation [CHICA]) in five urban pediatric primary care clinics. Families of children with epilepsy were contacted by telephone before and after implementation to assess if the clinician discussed SUDEP at their respective encounters.<\/jats:p><jats:p>\n          Results\u2003The CHICA\u2013SUDEP module screened 7,154 children age 0 to 21 years for seizures over 7 months; 108 (1.5%) reported epilepsy. We interviewed 101 families after primary care encounters (75 before and 26 after implementation) over 9 months. After starting CHICA\u2013SUDEP, the number of caregivers who reported discussing SUDEP with their child's clinician more than doubled from 21% (16\/75) to 46% (12\/26; p\u2009=\u20090.03), and when the parent recalled who brought up the topic, 80% of the time it was the clinician. The differences between timing and sampling methodologies of before and after intervention cohorts could have led to potential sampling and recall bias.<\/jats:p><jats:p>\n          Conclusion\u2003Clinician\u2013family discussions about SUDEP significantly increased in pediatric primary care clinics after introducing a systematic, computerized screening and decision support module. These tools demonstrate potential for increasing patient-centered education about SUDEP, as well as incorporating other guideline-recommended algorithms into primary and subspecialty cares.<\/jats:p><jats:p>\n          Clinical Trial Registration\u2003clinicaltrials.gov, NCT03502759.<\/jats:p>","DOI":"10.1055\/s-0040-1722221","type":"journal-article","created":{"date-parts":[[2021,2,18]],"date-time":"2021-02-18T01:36:06Z","timestamp":1613612166000},"page":"090-099","source":"Crossref","is-referenced-by-count":7,"title":["Improving Patient-Centered Communication about Sudden Unexpected Death in Epilepsy through Computerized Clinical Decision Support"],"prefix":"10.1055","volume":"12","author":[{"given":"Randall W.","family":"Grout","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Children's Health Services Research, Indiana University, Indianapolis, Indiana, United States"},{"name":"Center for Biomedical Informatics, Regenstrief Institute, Inc., Indianapolis, Indiana, United States"}]},{"given":"Jeffrey","family":"Buchhalter","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, University of Calgary, Section of Neurology, Alberta Children's Hospital, Calgary, Canada"}]},{"given":"Anup D.","family":"Patel","sequence":"additional","affiliation":[{"name":"Division of Neurology, Nationwide Children's Hospital and Department of Pediatrics, The Ohio State University College of Medicine, Columbus, Ohio, United States"}]},{"given":"Amy","family":"Brin","sequence":"additional","affiliation":[{"name":"Child Neurology Foundation, Minneapolis, Minnesota, United States"}]},{"given":"Ann A.","family":"Clark","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Children's Health Services Research, Indiana University, Indianapolis, Indiana, United States"}]},{"given":"Mary","family":"Holmay","sequence":"additional","affiliation":[{"name":"Greenwich Biosciences, Carlsbad, California, United States (at the time of this study)"}]},{"given":"Tyler J.","family":"Story","sequence":"additional","affiliation":[{"name":"Greenwich Biosciences, Carlsbad, California, United States (at the time of this study)"},{"name":"UCB, Inc., Smyrna, Georgia, United States"}]},{"given":"Stephen M.","family":"Downs","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Children's Health Services Research, Indiana University, Indianapolis, Indiana, United States"},{"name":"Center for Biomedical Informatics, Regenstrief Institute, Inc., Indianapolis, Indiana, United States"}]}],"member":"194","published-online":{"date-parts":[[2021,2,17]]},"reference":[{"issue":"02","key":"ref1","doi-asserted-by":"crossref","first-page":"170","DOI":"10.1212\/WNL.0000000000004094","article-title":"The incidence of SUDEP: a nationwide population-based cohort study","volume":"89","author":"O 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