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Inadequacies of hospital-level critical congenital heart disease screening data reports: implications for research and quality efforts

Journal of Perinatology volume 41, pages 1611–1620 (2021)Cite this article

Subjects

Abstract

Objective

Assess the quality of critical congenital heart disease (CCHD) screening data reports in California, where CCHD screening is not mandatory but reporting is.

Study design

Retrospective review of California hospital-level CCHD screening data to evaluate data reliability and adherence to state screening and reporting recommendations. Data were evaluated for internal consistency and compared to two databases.

Results

Over one-third of hospitals did not submit data. Only 70.7% of the Vital Records live births were reported in CCHD screening data. Only 46% of reporting hospitals submitted data with matching numbers of completed screens and results, and 22% matched their respective live births in a second database.

Conclusion

CCHD data reporting in California is incomplete, which may miss 359 CCHD cases/year from non-reporting. Data inconsistencies may miss additional cases. Mandatory screening, reporting, and improvements in data reliability are urgently needed to inform screening modifications and enhance timely detection and disease surveillance.

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Fig. 1: Illustration of critical congenital heart disease screen reporting in California.
Fig. 2: Illustration of our call to action for mandatory critical congenital heart disease screening with high-quality patient-level data and funding.

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Acknowledgements

Thank you to Pooria Assadi and Khae Saechao for their invaluable assistance with data management. Data were obtained from DHCS under data use agreement number 17-07-03. The findings and conclusions in this article are those of the authors and do not represent the views or opinions of the State of California.

Funding

This project was funded by University of California, Davis Department of Pediatrics. Additionally, HS’s effort was supported by the National Center for Advancing Translational Sciences (NCATS), National Institutes of Health (NIH) (through grant UL1 TR001860 and linked award KL2 TR001859) and by Eunice Kennedy Shriver National Institute of Child Health & Human Development (NICHD) (1R21 1HD099239-01). LRK’s effort was supported by the NCATS, NIH (through grant UL1 TR001860), and the National Institutes of Health Building Interdisciplinary Research Careers in Women’s Health Program (K12HD051958). SL was supported by NICHD, NIH (5R01 HD072929-09). The contents of this publication are solely the responsibility of the authors and do not represent the official views of the NIH. Funded by the National Institutes of Health (NIH). The authors have no other financial relationships relevant to this article to disclose.

Author information

Authors and Affiliations

  1. Department of Pediatrics, University of California Davis, Sacramento, CA, USA

    Heather Siefkes, Laura R. Kair & Satyan Lakshminrusimha

  2. Newborn Foundation, St. Paul, MN, USA

    Annamarie Saarinen

Authors
  1. Heather Siefkes
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  2. Laura R. Kair
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  3. Annamarie Saarinen
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  4. Satyan Lakshminrusimha
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Contributions

HS conceptualized and designed the study, carried out the initial analyses, drafted the initial manuscript, and reviewed and revised the manuscript. LRK and AS assisted with the design of the study and interpretation of results and critically reviewed and revised the manuscript. SL conceptualized and designed the study, interpreted the data analysis, and critically reviewed and revised the manuscript. All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

Corresponding author

Correspondence to Heather Siefkes.

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Conflict of interest

AS is a consultant for Masimo doing economic modeling and health outcome research. This consulting work began after this study was designed and Masimo did not have input on this study design or interpretation of the results. The authors do not have other conflicts of interest to disclose.

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Siefkes, H., Kair, L.R., Saarinen, A. et al. Inadequacies of hospital-level critical congenital heart disease screening data reports: implications for research and quality efforts. J Perinatol 41, 1611–1620 (2021). https://doi.org/10.1038/s41372-020-00783-z

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