Racial/ethnic disparities in timing of death during childhood among children with congenital heart defects

Nembhard, Wendy N.; Xu, Ping; Ethen, Mary K.; Fixler, David E; Salemi, Jason L.; Canfield, Mark A.

doi:10.1002/bdra.23169

Cited by 38 publications

(37 citation statements)

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“…[3][4][5][6][7][8][9]13,26 Variation in study survival rates, which we could not be assessed with our data, could be due to differences in operative techniques, different institution types where surgery is done, inclusion of birth eras with limited potential for surgical intervention, or inclusion of infants with chromosomal anomalies. However, although all studies note stabilization in survival beyond infancy, our study demonstrates relative stability through adolescence.…”

Section: Discussionmentioning

confidence: 92%

“…7 This finding of a high survival rate beyond infancy indicates that the most critical and vulnerable period of mortality is the first year of life, and both health care professionals and parents face challenging treatment decisions. [27][28][29] With more families opting for surgery, 30 our finding of a high survival rate beyond infancy also suggests that a growing number of children with HLHS are likely to reach adolescence and adulthood.…”

Section: Discussionmentioning

confidence: 99%

“…1 It is fatal without surgical intervention and responsible for 25% to 40% of all neonatal cardiac mortality. 2 Studies have shown 1-year survival for HLHS ranges from 20% to 60%, [3][4][5][6][7][8][9] with relatively stable 5-year, 10-year, and 15-year survival of ~40%. 4,6 The highest mortality for infants with HLHS undergoing surgical intervention is usually with stage 1 palliation and the interstage period between stage 1 and stage 2 surgery, both done in the first year of life.…”

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Survival of Children With Hypoplastic Left Heart Syndrome

2015

PEDIATRICS

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OBJECTIVE-To examine the survival of infants with hypoplastic left heart syndrome (HLHS) and potential influence of demographic and clinical characteristics on survival using populationbased data. METHODS-Infants RESULTS-The overall survival probability to 2009 was 24% and significantly improved over time: from 0% in 1979-1984 to 42% in 1999-2005. Survival probability was 66% during the first week, 27% during the first year of life, and 24% during the first 10 years. Survival of very low and low birth weight or preterm infants and those born in high-poverty neighborhoods was significantly poorer. For children with information on surgical intervention (n = 88), the overall survival was 52%, and preterm infants had significantly poorer survival (31%) compared with term infants (56%). For children who survived to 1 year of age, long-term survival was ~90%.CONCLUSIONS-Survival to adolescence of children with nonsyndromic HLHS born in metropolitan Atlanta has significantly improved in recent years, with those born full term, with normal birth weight, or in a low-poverty neighborhood having a higher survival probability.Address correspondence to Tiffany Riehle-Colarusso, MD, MPH, National Center on Birth Defects and Developmental Disabilities, Centers for Disease Control and Prevention, Mailstop E-86, 4770 Buford Hwy, Atlanta, GA 30341. tcolarusso@cdc.gov. Dr Siffel conceptualized and designed the study, analyzed and interpreted data, drafted the manuscript, and revised the manuscript critically for important intellectual content; Drs Riehle-Colarusso, Oster, and Correa contributed substantially to the study concept and design and interpretation of data, and revised the manuscript critically for important intellectual content; and all authors approved the final manuscript as submitted.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. FINANCIAL DISCLOSURE:The authors have indicated they have no financial relationships relevant to this article to disclose. POTENTIAL CONFLICT OF INTEREST:The authors have indicated they have no potential conflicts of interest to disclose. with selected congenital heart defects and found that children with HLHS born in later years had a significantly higher survival probablity. 13 However, no other population-based study has examined survival of HLHS beyond childhood using multiple sources of mortality data, across several birth eras, and prognostic factors. In addition to improvements in medical care, other potential prognostic factors include infant characteristics such as low birth weight, prematurity, presence of other birth defects or chromosomal anomalies, race/ ethnicity, and high poverty neighborhood. 6,14,15 However, the extent to which these factors may influence survival is uncertain. HHS Public AccessIn this study, we examined changes over time in survival of children with HLHS using population-based birth defects surveillance data collected on c...

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Section: Discussionmentioning

confidence: 92%

Section: Discussionmentioning

confidence: 99%

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confidence: 99%

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Survival of Children With Hypoplastic Left Heart Syndrome

2015

PEDIATRICS

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“…[93][94][95][96] It is reported that hospital stays after cardiac surgery are longer, and in-hospital mortality rates are higher, among black and Hispanic children than among white children, 97,98 and ethnic variations in mortality rates appear to persist into later childhood. [99][100][101] Although genetic, biological or socioeconomic factors may partly explain racial and ethnic variations, some US authors have suggested that unequal access to diagnosis and care also contributes to differences in mortality. 102,103 However, these findings may not apply within the context of the UK health-care model.…”

Section: Development Of a Risk Model For Death Or Emergency Readmissionmentioning

confidence: 99%

Infant deaths in the UK community following successful cardiac surgery: building the evidence base for optimal surveillance, a mixed-methods study

Brown

Wray

Knowles

et al. 2016

Health Serv Deliv Res

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This report should be referenced as follows:Brown KL, Wray J, Knowles RL, Crowe S, Tregay J, Ridout D, et al. Infant deaths in the UK community following successful cardiac surgery: building the evidence base for optimal surveillance, a mixed-methods study . Health Serv Deliv Res 2016;4(19). Health Services and Delivery ResearchISSN 2050-4349 (Print) ISSN 2050-4357 (Online) This journal is a member of and subscribes to the principles of the Committee on Publication Ethics (COPE) (www.publicationethics.org/).Editorial contact: nihredit@southampton.ac.ukThe full HS&DR archive is freely available to view online at www.journalslibrary.nihr.ac.uk/hsdr. Print-on-demand copies can be purchased from the report pages of the NIHR Journals Library website: www.journalslibrary.nihr.ac.uk Criteria for inclusion in the Health Services and Delivery Research journalReports are published in Health Services and Delivery Research (HS&DR) if (1) they have resulted from work for the HS&DR programme or programmes which preceded the HS&DR programme, and (2) they are of a sufficiently high scientific quality as assessed by the reviewers and editors. HS&DR programmeThe Health Services and Delivery Research (HS&DR) programme, part of the National Institute for Health Research (NIHR), was established to fund a broad range of research. It combines the strengths and contributions of two previous NIHR research programmes: the Health Services Research (HSR) programme and the Service Delivery and Organisation (SDO) programme, which were merged in January 2012.The HS&DR programme aims to produce rigorous and relevant evidence on the quality, access and organisation of health services including costs and outcomes, as well as research on implementation. The programme will enhance the strategic focus on research that matters to the NHS and is keen to support ambitious evaluative research to improve health services.For more information about the HS&DR programme please visit the website: http://www.nets.nihr.ac.uk/programmes/hsdr This reportThe research reported in this issue of the journal was funded by the HS&DR programme or one of its preceding programmes as project number 10/2002/29. The contractual start date was in October 2012. The final report began editorial review in April 2015 and was accepted for publication in September 2015. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The HS&DR editors and production house have tried to ensure the accuracy of the authors' report and would like to thank the reviewers for their constructive comments on the final report document. However, they do not accept liability for damages or losses arising from material published in this report.This report presents independent research funded by the National Institute for Health Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, NETSCC, the HS&DR programme or the Depart...

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“…These findings complement the results of several recent studies of single state registries which documented significantly higher adjusted hazards (compared with white children) of early childhood death for AAs and Latinos with major birth defects overall 19 and with several specific congenital heart defects. 20,21,22 …”

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Dead Wrong: The Growing List of Racial/Ethnic Disparities in Childhood Mortality

Flores

Escala

Hall

2015

The Journal of Pediatrics

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Racial/ethnic disparities in timing of death during childhood among children with congenital heart defects

Abstract: Racial/ethnic differences in mortality were most notably observed during the postneonatal period and early childhood. Future studies should assess factors associated with this disparity in mortality risk for infants with CHDs.

Cited by 38 publications

References 45 publications

Survival of Children With Hypoplastic Left Heart Syndrome

Survival of Children With Hypoplastic Left Heart Syndrome

Infant deaths in the UK community following successful cardiac surgery: building the evidence base for optimal surveillance, a mixed-methods study

Dead Wrong: The Growing List of Racial/Ethnic Disparities in Childhood Mortality

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