Parenthood in people with kidney failure: evolution and evaluation of completeness of ANZDATA registry parenthood data

Abstract

Background: 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. Methods: 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. Results: 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%. Conclusion: 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.