Dark Tyra, Simpson Kit N, Gurung Sitaji, Pennar Amy L, Chew Marshall, Naar Sylvie
College of Medicine, Florida State University, Tallahassee, FL, United States.
College of Health Professions, Medical University of South Carolina, Charleston, SC, United States.
JMIR Form Res. 2022 Apr 25;6(4):e25483. doi: 10.2196/25483.
One of the most difficult areas in the fight against HIV/AIDS is reaching out to youth aged 13 to 24 years. The proportion of youth living with HIV/AIDS on antiretroviral therapy (ART) and who are virally undetectable is low, highlighting significant challenges for reaching the Joint United Nations Program on HIV targets.
This study aimed to assess the feasibility of obtaining key clinical indicators and monitoring treatment, viral suppression, and retention components of the youth HIV treatment cascade in Adolescent Trials Network for HIV/AIDS Interventions clinics using electronic health record (EHR) downloads and to provide baseline characteristics for the study participants.
EHR data were systematically obtained from multiple clinical sites and used to meaningfully capture clinical characteristics, initiation of antiretrovirals, and retention in care, which are part of the Centers for Disease Control and Prevention's 4 continuum of care measures. In addition, this study used standard cost values attached to Current Procedural Terminology codes to estimate the cost per visit.
Only 2 of the 4 Centers for Disease Control and Prevention treatment cascade measures were assessed using routine EHR data. EHR data are not adequate for monitoring HIV testing or linkage to care because denominator data are not available. However, the data work well for measuring ART initiation and adequately for retention in care. The sites were broadly able to provide information for the required data. However, in most cases, these data are insufficient for identifying patterns of missed appointments because such misses are not captured in the EHR system. Sites with good access to data management resources can operate more efficiently for cascade monitoring study purposes.
Data other than EHRs are needed to measure HIV testing and linkage to youth care. EHR data are useful for measuring ART initiation and work moderately well for measuring retention in care. Site data management resources should be part of the selection process when looking for site partners for clinical studies that plan to use EHR data. Study planners should determine the feasibility of additional funding for organizations in need of additional information technology or data management resources.
在抗击艾滋病毒/艾滋病的斗争中，最难触及的群体之一是13至24岁的年轻人。接受抗逆转录病毒治疗（ART）且病毒载量不可检测的感染艾滋病毒/艾滋病的青年比例较低，这凸显了实现联合国艾滋病毒联合规划署目标面临的重大挑战。
本研究旨在评估利用电子健康记录（EHR）下载获取关键临床指标以及监测青少年艾滋病毒/艾滋病干预试验网络诊所中青少年艾滋病毒治疗流程的治疗、病毒抑制和留存环节的可行性，并为研究参与者提供基线特征。
从多个临床站点系统获取EHR数据，并用于有效获取临床特征、抗逆转录病毒药物的起始使用情况以及护理留存情况，这些是疾病控制与预防中心4项连续护理措施的一部分。此外，本研究使用当前程序术语编码附带的标准成本值来估算每次就诊的费用。
利用常规EHR数据仅评估了疾病控制与预防中心4项治疗流程措施中的2项。EHR数据不足以监测艾滋病毒检测或与护理的关联情况，因为分母数据不可用。然而，这些数据在衡量ART起始使用情况方面效果良好，在衡量护理留存情况方面也足够。各站点大致能够提供所需数据的信息。然而，在大多数情况下，这些数据不足以识别错过预约的模式，因为此类错过情况未在EHR系统中记录。能够充分获取数据管理资源的站点在进行流程监测研究时可以更高效地运作。
需要EHR以外的数据来衡量艾滋病毒检测以及与青少年护理的关联情况。EHR数据在衡量ART起始使用情况方面很有用，在衡量护理留存情况方面效果尚可。在寻找计划使用EHR数据的临床研究站点合作伙伴时，站点数据管理资源应作为选择过程的一部分。研究规划者应确定为需要额外信息技术或数据管理资源的组织提供额外资金的可行性。
