Department of Pediatrics, Children's Health Services Research, Indiana University, Indianapolis, Indiana, United States.
Center for Biomedical Informatics, Regenstrief Institute, Inc., Indianapolis, Indiana, United States.
Appl Clin Inform. 2021 Jan;12(1):90-99. doi: 10.1055/s-0040-1722221. Epub 2021 Feb 17.
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.
This pilot study aimed to demonstrate whether computerized decision support could increase patient communication about SUDEP.
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.
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; = 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.
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.
clinicaltrials.gov, NCT03502759.
癫痫猝死（SUDEP）是一种罕见但致命的风险，患者、家长和专业协会都明确建议与患者和家属讨论该风险。然而，这种对话并没有常规进行。
本研究旨在证明计算机决策支持是否能增加患者对 SUDEP 的沟通。
采用前瞻性前后对照研究，评估计算机决策支持对 SUDEP 咨询提供的影响。干预措施是在现有的计算机决策支持系统（儿童健康自动化改善系统，CHICA）中添加一个用于 SUDEP 的筛查、警示、教育和随访模块。在实施前后，通过电话联系癫痫患儿的家属，评估医生在各自就诊时是否讨论过 SUDEP。
CHICA-SUDEP 模块在 7 个月的时间内对 7154 名 0 至 21 岁的儿童进行了癫痫筛查；其中 108 名（1.5%）患有癫痫。在 9 个月的时间里，我们对 101 名进行了初级保健就诊后的家属进行了访谈（75 名在干预前，26 名在干预后）。在启动 CHICA-SUDEP 后，报告与孩子的医生讨论过 SUDEP 的照顾者比例从 21%（75 名中的 16 名）增加到 46%（26 名中的 12 名； = 0.03），而且当家长回忆起是谁提出这个话题时，80%的情况下是医生。干预前后队列的时间和抽样方法的差异可能导致了潜在的抽样和回忆偏倚。
在引入系统性、计算机化的筛查和决策支持模块后，儿科初级保健诊所中医生与患者家庭关于 SUDEP 的讨论显著增加。这些工具显示了在患者中增加关于 SUDEP 的以患者为中心的教育的潜力，以及将其他指南推荐的算法纳入初级和专科护理。
clinicaltrials.gov，NCT03502759。
