Central Northern Adelaide Renal and Transplantation Services (CNARTS), Royal Adelaide Hospital, Port Road, Adelaide, South Australia, 5000, Australia.
Australia and New Zealand Dialysis and Transplant Registry (ANZDATA), South Australian Health & Medical Research Institute (SAHMRI), Adelaide, Australia.
J Nephrol. 2023 Sep;36(7):2125-2131. doi: 10.1007/s40620-023-01696-8. Epub 2023 Aug 9.
Parenthood data has been collected by the Australia and New Zealand Dialysis and Transplant Registry (ANZDATA) since its inception in 1968, with a specific parenthood survey since 2001 of core maternal and fetal outcomes, which was further expanded in 2017 to collect additional obstetric and clinical data. We evaluated the parenthood dataset completeness over the evolution of the surveys.
Descriptive statistics were used to quantify the completeness of data reported for male and female patients receiving KRT between 1963 and 2021 and compare parenthood surveys over time.
Core data items consistently had more than 85% completeness rates for all survey iterations. Most data items introduced in 2018 had less than 85% completeness. Of these, drug therapy during pregnancy, common medical complications, and labour and delivery data items had the highest completeness (70-85%), whereas dialysis-related items had a wide range of completeness, ranging from 44 to 80%.
Our findings underpin the robustness of the ANZDATA parenthood dataset but also highlight that more detailed clinical data can be difficult to capture, despite enabling better understanding of drivers of outcomes and risk stratification in this high-risk cohort. To overcome current limitations, strategies must be implemented to augment data completeness.
自 1968 年成立以来，澳大利亚和新西兰透析和移植登记处（ANZDATA）一直在收集育儿数据，自 2001 年以来，一直在进行核心母婴和胎儿结局的专门育儿调查，该调查在 2017 年进一步扩大，以收集额外的产科和临床数据。我们评估了随着调查的发展，育儿数据集的完整性。
使用描述性统计来量化 1963 年至 2021 年间接受 KRT 的男性和女性患者报告数据的完整性，并比较随时间推移的育儿调查。
核心数据项目在所有调查迭代中始终具有超过 85%的完整性率。2018 年引入的大多数数据项目的完整性都低于 85%。在这些项目中，妊娠期间的药物治疗、常见的医疗并发症以及分娩数据项目的完整性最高（70-85%），而与透析相关的项目的完整性范围很广，从 44%到 80%不等。
我们的研究结果为 ANZDATA 育儿数据集的稳健性提供了依据，但也强调，尽管可以更好地了解高风险人群中结局和风险分层的驱动因素，但更详细的临床数据可能难以捕捉。为了克服当前的限制，必须实施策略来提高数据的完整性。
