PARENTHOOD IN PEOPLE WITH KIDNEY FAILURE: EVOLUTION AND EVALUATION OF THE PARENTHOOD DATA COLLECTION OF THE ANZDATA REGISTRY

Ms Rhea Danner¹, Ms ERANDI HEWAWASAM^2,3, A/Prof SHILPANJALI JESUDASON^1,3

¹Central Northern Adelaide Renal and Transplantation Services , Adelaide, Australia, ²Australian and New Zealand Dialysis and Transplant Registry, Adelaide , Australia, ³Faculty of Health and Medical Sciences at University of Adelaide, Adelaide , Australia

Aim:

This study aimed to further evaluate the parenthood event data reported to the Australia and New Zealand Dialysis and Transplant Registry (ANZDATA) over time, to determine whether expansion of the parenthood survey influenced reporting completeness and data quality

Background:

ANZDATA has collected parenthood event data since its inception, advancing our understanding of outcomes of pregnancies for this high-risk parent group. The data collection process was formalised in 2001 with a specific parenthood survey and subsequently expanded in 2017. We evaluated the parenthood event data to determine whether expansion of the parenthood survey influenced reporting completeness and data quality.

Methods:

ANZDATA is a prospective, national registry collecting data on all dialysis and transplant patients in Australia and New Zealand annually. Descriptive statistics (absolute numbers and percentages) were used to quantify the completeness of data and compare parenthood surveys over time.

Results:

The key finding was that the core data items were recorded with 100%, or near to, completeness across all data collection tools. Completeness of data reporting did not substantially change from 2001 to 2017 for items that were recorded in both surveys.  The majority of additional items in the 2017 Parenthood survey, focused on dialysis intensity, graft outcomes, and medical complications during pregnancy, had less than 70% completeness of data.

Conclusion:

This study was the first to analyse the data completeness of the ANZDATA parenthood survey. Our findings underpin the robustness of the data collection, but also highlight the need for more in-depth review of the data items and education of data collectors to support completion.

Biography:

Bio to come