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Ascertainment of birth defects: the effect on completeness of adding a new source of data
C Bower1, D Silva, T R Henderson
1Western Australian Birth Defects Registry, King Edward Memorial Hospital, Subiaco, Australia. caroline.bower@health.wa.gov.au
Insights
Adding rural paediatric data improved birth defect ascertainment for rural and Aboriginal children in Western Australia. While overall prevalence saw minimal change, these specific groups showed a slight increase, highlighting the importance of comprehensive data collection for public health initiatives.
Area of Science:
- Public Health
- Epidemiology
- Paediatrics
Background:
- The Western Australian (WA) Birth Defects Registry strives for complete ascertainment of birth defects.
- Existing data showed lower proportions of birth defects in rural and Aboriginal children compared to metropolitan and non-Aboriginal populations.
- The study investigated the impact of incorporating data from the Rural Paediatric Service (RPS) on ascertainment rates.
Purpose of the Study:
- To evaluate the effect of adding Rural Paediatric Service (RPS) data on the ascertainment of birth defects in Western Australia.
- To assess improvements in birth defect prevalence reporting for rural and Aboriginal children.
Main Methods:
- A dataset of birth defects from the Rural Paediatric Service (RPS) database for children born between 1980 and 1997 was compiled.
- This RPS data was linked with the existing Western Australian (WA) Birth Defects Registry.
- Prevalence rates were compared before and after the data linkage.
Main Results:
- The overall prevalence of birth defects increased slightly from 5.38% to 5.41% after adding RPS data.
- Prevalence for rural residents increased from 4.67% to 4.76%, and for Aboriginal children from 4.55% to 4.78%.
- Fetal alcohol syndrome prevalence increased from 0.13 to 0.18 per 1000 following the inclusion of 21 new cases from the RPS.
Conclusions:
- Integrating data from sources like the Rural Paediatric Service (RPS) can enhance the ascertainment of birth defects, particularly in underserved populations.
- Complete ascertainment is crucial for the development and evaluation of preventive programs.
- Accurate data is essential for investigating potential clusters of birth defects.
Background:
The Western Australian (WA) Birth Defects Registry aims for complete ascertainment of birth defects in WA, but the proportions of birth defects in rural areas and in Aboriginal children are lower than in metropolitan and non-Aboriginal children. The effect on ascertainment of adding data from the Rural Paediatric Service (RPS) was investigated.
Method:
A file of all cases of birth defects for children born 1980-1997 and recorded on the RPS database was linked to the Registry.
Results:
The addition of this new data source had little effect on the overall prevalence of birth defects (an increase from 5.38 to 5.41%). There was a slightly greater effect on the prevalence of birth defects in rural residents (4.67%-4.76%) and Aboriginal children (4.55-4.78%), although the prevalence for each of these groups is still less than for metropolitan residents and non-Aboriginal infants, respectively. All major categories of birth defects were represented in the new cases and, in general, their addition made little difference to the prevalence of each category. The exception was fetal alcohol syndrome, which increased from 0.13 per 1000 to 0.18 per 1000 once the 21 new cases from the RPS were added.
Conclusion:
Complete ascertainment of birth defects is important in developing and evaluating preventive programs, and in investigating clusters of birth defects.