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. 2021 Jan;12(1):90-99.
doi: 10.1055/s-0040-1722221. Epub 2021 Feb 17.

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

Randall W Grout  1   2 , Jeffrey Buchhalter  3 , Anup D Patel  4 , Amy Brin  5 , Ann A Clark  1 , Mary Holmay  6 , Tyler J Story  6   7 , Stephen M Downs  1   2
Affiliations

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

Randall W Grout et al. Appl Clin Inform. 2021 Jan.

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.

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Conflict of interest statement

R.W.G. has received grant support through Indiana University from Digital Health Solutions, LLC, and Pfizer, Inc. S.M.D. cofounded CHICA and Digital Health Solutions, LLC, which holds license from Indiana University to commercialize CHICA. T.J.S. and M.H. are employees of Greenwich Biosciences. J.B. has been reimbursed for consulting services by The Epilepsy Foundation, The Epilepsy Study Consortium, Eisai, UCB, Upsher-Smith, and Zogenix.

Figures

Fig. 1
Fig. 1
Screenshot of clinician prompt. In this example, the family has reported multiple issues with seizures, medications and seeing the neurologist. The clinician has documented a response. SUDEP, sudden unexpected death in epilepsy.
Fig. 2
Fig. 2
A CHICA–SUDEP algorithm. CHICA, child health improvement through computer automation; SUDEP, sudden unexpected death in epilepsy.
Fig. 3
Fig. 3
Survey recruitment flowchart.
See this image and copyright information in PMC

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References

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