Abstract
Background
Population-based birth defects surveillance is a core public health activity in the United States (U.S.); however, the lack of national data quality standards has limited the use of birth defects surveillance data across state programs. Development of national standards will facilitate data aggregation and utilization across birth defects surveillance programs in the U.S.
Methods
Based on national standards for other U.S. public health surveillance programs, existing National Birth Defects Prevention Network (NBDPN) guidelines for conducting birth defects surveillance, and information from birth defects surveillance programs regarding their current data quality practices, we developed 11 data quality measures that focused on data completeness (n = 5 measures), timeliness (n = 2), and accuracy (n = 4). For each measure, we established tri-level performance criteria (1 = rudimentary, 2 = essential, 3 = optimal). In January 2014, we sent birth defects surveillance programs in each state, District of Columbia, Puerto Rico, Centers for Disease Control and Prevention (CDC), and the U.S. Department of Defense Birth and Infant Health Registry an invitation to complete a self-administered NBDPN Standards Data Quality Assessment Tool. The completed forms were electronically submitted to the CDC for analyses.
Results
Of 47 eligible population-based surveillance programs, 45 submitted a completed assessment tool. Two of the 45 programs did not meet minimum inclusion criteria and were excluded; thus, the final analysis included information from 43 programs. Average scores for four of the five completeness performance measures were above level 2. Conversely, the average scores for both timeliness measures and three of the four accuracy measures were below level 2. Surveillance programs using an active case-finding approach scored higher than programs using passive case-finding approaches for the completeness and accuracy measures, whereas their average scores were lower for timeliness measures.
Conclusions
This initial, nation-wide assessment of data quality across U.S. population-based birth defects surveillance programs highlights areas for improvement. Using this information to identify strengths and weaknesses, the birth defects surveillance community, working through the NBDPN, can enhance and implement a consistent set of standards that can promote uniformity and enable surveillance programs to work towards improving the potential of these programs.
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Background
Collectively, major structural birth defects are a common, costly, and critical public health challenge. In the United States (U.S.), one in every 33 babies is born with at least one of these birth defects, and one in five infants will die in their first year of life as a result of their birth defect [1, 2]. Timely and accurate population-based data on birth defects can contribute to early identification of environmental concerns, determination of etiologic agents, evaluation of prevention programs, estimation of prevalence, assessment of disparities, and timely referral to services for those with birth defects, with the hope of improving outcomes.
Although the U.S. system of national birth registration serves as an important data source for a number of health indicators, the information collected on birth defects is limited with both low sensitivity and specificity [3–5]. Instead, birth defect data in the United States are obtained from state or sub-state population-based birth defects surveillance programs [6].
A major challenge to using birth defects surveillance data effectively on a national level has been the lack of core data quality standards across birth defects surveillance programs. This lack of uniformity across programs limits the number of surveillance programs that can provide high quality data to produce national prevalence estimates for birth defects in the United States [ National standards for birth defects surveillance programs will allow for better pooling and translation of surveillance data at the state, multi-state, and national levels, thereby increasing the potential of these data to inform critical public health questions. The progression from recommended guidelines to established standards for birth defects surveillance is a logical step in the evolution of birth defects surveillance programs and offers the potential to generate data that will be more current, complete and accurate, as well as more uniform across states. Currently, about one-half of the birth defects surveillance programs in the United States meet the essential level of performance. Concerted efforts and resources will be needed to achieve uniform high quality national data.Conclusions
Abbreviations
- CDC:
-
Centers for Disease Control and Prevention
- CRAA:
-
Cancer Registries Amendment Act
- DC:
-
District of Columbia
- DOD:
-
Department of Defense Birth and Infant Health Registry
- EUROCAT:
-
European Surveillance of Congenital Anomalies
- NAACCR:
-
North American Association of Central Cancer Registries
- NAPHSIS:
-
National Association of Public Health Statistics and Information Systems
- NBDPN:
-
National Birth Defects Prevention Network
- NCHS:
-
National Center for Health Statistics
- NCI:
-
National Cancer Institute
- NPCR:
-
National Program of Cancer Registries
- PR:
-
Puerto Rico
- US:
-
United States
- VSCP:
-
Vital Statistics Cooperative Program
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Acknowledgements
The authors would like to thank Jane Fornoff, Rebecca Liberman, Brennan Martin and Sherry Spence who helped to develop and refine the data elements document. We also thank Angela Lin, Tiffany Colarusso and Jan Cragan for their assistance revising the list of birth defects.
Disclaimer
The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention.
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Authors’ contributions
MA, CTM, PAR, GC, MF MAC, CS, RSK contributed to the design, analysis and interpretation of the data and drafting and editing the article. CTM and JI acquired the data, conducted the data analysis and developed the tables and figures. SK contributed to the design, data analysis and development of tables and figures. RSO provided expertise as a clinical geneticist and led the revision of the NBDPN birth defects list. RR, CS, and BM contributed to the study design, and analysis and interpretation of the data. RR and CTM led the revision of the NBDPN data elements list. All authors contributed to the development of the Data Quality Assessment Tool and read and approved the final manuscript.
Additional file
Additional file 1:
NBDPN Standards Assessment Tool on Data Quality. (DOCX 215 kb)
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Anderka, M., Mai, C.T., Romitti, P.A. et al. Development and implementation of the first national data quality standards for population-based birth defects surveillance programs in the United States. BMC Public Health 15, 925 (2015). https://doi.org/10.1186/s12889-015-2223-2
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DOI: https://doi.org/10.1186/s12889-015-2223-2