A Clinical Outcomes Data Archive for a Comprehensive Fetal Diagnosis and Treatment Center.

IF 1.6 3区 医学 Q3 OBSTETRICS & GYNECOLOGY Fetal Diagnosis and Therapy Pub Date : 2024-10-08 DOI:10.1159/000541877
Thomas A Reynolds, Matthew A Goldshore, Sabrina Flohr, Sierra Land, Leny Mathew, Juliana S Gebb, Edward R Oliver, Natalie E Rintoul, Anne M Ades, Elizabeth E Foglia, Catherine M Avitabile, Howard B Panitch, Gregory G Heuer, Lori J Howell, N Scott Adzick, Holly L Hedrick
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Abstract

Introduction: Data on near- and long-term clinical outcomes are critical for the care of all maternal-fetal patients presenting to a fetal center. This is especially important since physiologic and neurodevelopmental attributes do not manifest until later childhood when multilevel (e.g., individual, family, policy) factors have a direct influence on health outcomes. Electronic health records (EHRs) create opportunity for efficient data collection. However, documentation structures are not designed for acquisition of key attributes, and changes over time and between-clinician differences can affect resultant output. Therefore, EHR derived datasets have limited ability to accurately characterize the clinical presentation and care trajectory of patients with congenital anomalies. In addition, in most systems, the fetus lacks a digital identity and requires relinking fetal attributes documented in the maternal chart to those from the pediatric EHR. This conundrum amplifies in the setting of multiple gestation, returning maternal patients, and pregnancies with fetal demise. Moreover, current data capture systems result in incomplete abstraction of variables that may confound, mediate, or moderate critical associations. Our objective was to develop and implement a prospective data capture platform to transform EHR data into an analytic-grade database for multipurpose use.

Methods: A unified platform for longitudinal follow-up of maternal-child dyads cared for at our fetal center, named the Clinical Outcomes Data Archive (CODA), was constructed. CODA was designed using a data dictionary based on multidisciplinary and interprofessional expert input, a relational identity for each patient, fetus, and pregnancy, and a process by which EHR-sourced and chart-abstracted data are validated by a well-trained team. Descriptive analyses were performed for data acquired between July 2022 and July 2023, and a comparison of studies before and after implementation of CODA is presented.

Conclusion: 5,394,106 data points were validated for 7,662 patients across 12 conditions. 2% of data points were found to be unreliable or undocumented. 91% of data points were sourced from the EHR. Eighty-five percent of condition-specific variables required manual chart abstraction. The study conducted with CODA was able to contribute to 18 other studies. CODA successfully merges EHR-sourced and manually abstracted documentation for longitudinal study of the maternal-child dyad.

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一个综合性胎儿诊断和治疗中心的临床结果数据档案。
导言:有关近期和远期疗效的数据对所有到胎儿中心就诊的母胎患者的护理至关重要。这一点非常重要,因为生理和神经发育属性直到童年时期才会显现,而童年时期的多层次因素会影响健康结果。电子健康记录(EHR)的文档结构并不是为获取关键属性而设计的,随着时间的推移而发生的变化以及医生之间的差异都会影响结果的输出。因此,电子病历衍生数据集准确描述先天性畸形患者临床表现和护理轨迹的能力有限。此外,胎儿缺乏数字身份,需要将母体病历中记录的属性与儿科电子病历中的属性重新链接。这一难题在多胎妊娠、回流孕产妇和胎儿夭折的情况下会进一步扩大。目前的数据系统导致对变量的抽取不完整,而这些变量可能会混淆、调解或缓和关键关联。我们的目标是开发并实施一个前瞻性数据采集平台,将电子病历数据转化为分析级数据库,供多用途使用:方法:我们建立了一个统一的母婴二人组纵向随访平台,命名为临床结果数据档案(CODA)。CODA 的设计使用了基于多学科输入的数据字典,每个患者、胎儿和妊娠的关系标识,以及对电子病历来源和图表摘要数据进行验证的流程。对 2022 年 7 月至 2023 年 7 月期间获取的数据进行了描述性分析,并对实施 CODA 前后的研究进行了比较。发现 2% 的数据点不可靠或未记录。91%的数据点来自电子病历。85%的特定病症变量需要人工抽取病历。使用 CODA 进行的研究为 18 项研究做出了贡献。CODA 成功合并了电子病历来源和人工抽取的文档,用于母婴二元组的纵向研究。
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来源期刊
Fetal Diagnosis and Therapy
Fetal Diagnosis and Therapy 医学-妇产科学
CiteScore
4.70
自引率
9.10%
发文量
48
审稿时长
6-12 weeks
期刊介绍: The first journal to focus on the fetus as a patient, ''Fetal Diagnosis and Therapy'' provides a wide range of biomedical specialists with a single source of reports encompassing the common discipline of fetal medicine.
期刊最新文献
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