利用先天性心脏病生物库数据与行政健康数据的新型数据链接，识别心血管结局，为基因组分析提供信息。
Using novel data linkage of congenital heart disease biobank data with administrative health data to identify cardiovascular outcomes to inform genomic analysis.
机构信息
Child Population and Translational Health Research, Children's Hospital at Westmead Clinical School, The University of Sydney, NSW, Australia, 2006.
Heart Centre for Children, Sydney Children's Hospital Network, Children's Hospital at Westmead, NSW, Australia.
出版信息
Int J Popul Data Sci. 2023 Nov 14;8(1):2150. doi: 10.23889/ijpds.v8i1.2150. eCollection 2023.
INTRODUCTION
Contemporary care of congenital heart disease (CHD) is largely standardised, however there is heterogeneity in post-surgical outcomes that may be explained by genetic variation. Data linkage between a CHD biobank and routinely collected administrative datasets is a novel method to identify outcomes to explore the impact of genetic variation.
OBJECTIVE
Use data linkage to identify and validate patient outcomes following surgical treatment for CHD.
METHODS
Data linkage between clinical and biobank data of children born from 2001-2014 that had a procedure for CHD in New South Wales, Australia, with hospital discharge data, education and death data. The children were grouped according to CHD lesion type and age at first cardiac surgery. Children in each 'lesion/age at surgery group' were classified into 'favourable' and 'unfavourable' cardiovascular outcome groups based on variables identified in linked administrative data including; total time in intensive care, total length of stay in hospital, and mechanical ventilation time up to 5 years following the date of the first cardiac surgery. A blind medical record audit of 200 randomly chosen children from 'favourable' and 'unfavourable' outcome groups was performed to validate the outcome groups.
RESULTS
Of the 1872 children in the dataset that linked to hospital or death data, 483 were identified with a 'favourable' cardiovascular outcome and 484 were identified as having a 'unfavourable' cardiovascular outcome. The medical record audit found concordant outcome groups for 182/192 records (95%) compared to the outcome groups categorized using the linked data.
CONCLUSIONS
The linkage of a curated biobank dataset with routinely collected administrative data is a reliable method to identify outcomes to facilitate a large-scale study to examine genetic variance. These genetic hallmarks could be used to identify patients who are at risk of unfavourable cardiovascular outcomes, to inform strategies for prevention and changes in clinical care.
简介
目前，先天性心脏病（CHD）的治疗方法已基本标准化，但术后结果仍存在差异，这种差异可能与遗传变异有关。通过将 CHD 生物样本库与常规收集的行政数据集进行数据链接，可以发现结果，从而探索遗传变异的影响。
目的
利用数据链接来识别和验证 CHD 患者手术后的结果。
方法
对 2001 年至 2014 年在澳大利亚新南威尔士州出生并接受 CHD 手术的儿童的临床和生物样本库数据与医院出院数据、教育和死亡数据进行数据链接。根据首次心脏手术时的 CHD 病变类型和年龄，将儿童分为不同的“病变/手术年龄组”。根据链接的行政数据中确定的变量，将每个“病变/手术年龄组”中的儿童分为“有利”和“不利”心血管结局组，这些变量包括：重症监护时间、住院总时间和首次心脏手术后 5 年内的机械通气时间。对“有利”和“不利”结局组中的 200 名随机儿童进行盲法病历审核，以验证结局组。
结果
在与医院或死亡数据相关联的 1872 名儿童中，483 名被确定为心血管结局“有利”，484 名被确定为心血管结局“不利”。病历审核发现，与使用链接数据分类的结果组相比，182/192 份记录（95%）的结果组具有一致性。
结论
经过精心策划的生物样本库数据集与常规收集的行政数据集的链接是一种可靠的方法，可以识别结果，从而促进大规模研究，以检查遗传变异。这些遗传特征可用于识别有发生不利心血管结局风险的患者，为预防策略提供信息，并改变临床护理。
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