Appl Clin Inform 2021; 12(01): 090-099
DOI: 10.1055/s-0040-1722221
Research Article

Improving Patient-Centered Communication about Sudden Unexpected Death in Epilepsy through Computerized Clinical Decision Support

Randall W. Grout
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
,
Jeffrey Buchhalter
3  Department of Pediatrics, University of Calgary, Section of Neurology, Alberta Children's Hospital, Calgary, Canada
,
Anup D. Patel
4  Division of Neurology, Nationwide Children's Hospital and Department of Pediatrics, The Ohio State University College of Medicine, Columbus, Ohio, United States
,
Amy Brin
5  Child Neurology Foundation, Minneapolis, Minnesota, United States
,
Ann A. Clark
1  Department of Pediatrics, Children's Health Services Research, Indiana University, Indianapolis, Indiana, United States
,
Mary Holmay
6  Greenwich Biosciences, Carlsbad, California, United States (at the time of this study)
,
Tyler J. Story
6  Greenwich Biosciences, Carlsbad, California, United States (at the time of this study)
7  UCB, Inc., Smyrna, Georgia, United States
,
Stephen M. Downs
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
› Author Affiliations
Funding This study was funded by Digital Health Solutions, LLC, through a grant provided by the Child Neurology Foundation.

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.

Protection of Human and Animal Subjects

The study was approved by the Indiana University Institutional Review Board.


Supplementary Material



Publication History

Received: 08 July 2020

Accepted: 18 November 2020

Publication Date:
17 February 2021 (online)

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