Randall W Grout1,2, Jeffrey Buchhalter3, Anup D Patel4, Amy Brin5, Ann A Clark1, Mary Holmay6, Tyler J Story6,7, Stephen M Downs1,2. 1. Department of Pediatrics, Children's Health Services Research, Indiana University, Indianapolis, Indiana, United States. 2. Center for Biomedical Informatics, Regenstrief Institute, Inc., Indianapolis, Indiana, United States. 3. Department of Pediatrics, University of Calgary, Section of Neurology, Alberta Children's Hospital, Calgary, Canada. 4. Division of Neurology, Nationwide Children's Hospital and Department of Pediatrics, The Ohio State University College of Medicine, Columbus, Ohio, United States. 5. Child Neurology Foundation, Minneapolis, Minnesota, United States. 6. Greenwich Biosciences, Carlsbad, California, United States (at the time of this study). 7. UCB, Inc., Smyrna, Georgia, United States.
Abstract
BACKGROUND: Sudden 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. OBJECTIVES: This pilot study aimed to demonstrate whether computerized decision support could increase patient communication about SUDEP. METHODS: A 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. RESULTS: The CHICA-SUDEP 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-SUDEP, 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 = 0.03), 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. CONCLUSION: Clinician-family 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. CLINICAL TRIAL REGISTRATION: clinicaltrials.gov, NCT03502759. Thieme. All rights reserved.
BACKGROUND: Sudden 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. OBJECTIVES: This pilot study aimed to demonstrate whether computerized decision support could increase patient communication about SUDEP. METHODS: A 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. RESULTS: The CHICA-SUDEP 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-SUDEP, 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 = 0.03), 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. CONCLUSION: Clinician-family 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. CLINICAL TRIAL REGISTRATION: clinicaltrials.gov, NCT03502759. Thieme. All rights reserved.
Authors: Aaron E Carroll; Nerissa S Bauer; Tamara M Dugan; Vibha Anand; Chandan Saha; Stephen M Downs Journal: JAMA Pediatr Date: 2014-09 Impact factor: 16.193
Authors: Neti A Gayatri; Matthew C H J Morrall; Vivek Jain; Pawan Kashyape; Karen Pysden; Colin Ferrie Journal: Epilepsia Date: 2010-01-07 Impact factor: 5.864
Authors: Vibha Anand; Aaron E Carroll; Paul G Biondich; Tamara M Dugan; Stephen M Downs Journal: Artif Intell Med Date: 2015-10-01 Impact factor: 5.326