Effect of Acculturation and Distance From Cardiac Center on Congenital Heart Disease Mortality

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

doi:10.1542/peds.2011-3114

Cited by 46 publications

(64 citation statements)

References 16 publications

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“…24,31,32,35 Children living 90-300 minutes from the cardiac centre were at significantly lower risk of unplanned readmission 29 compared with families living under 90 minutes away, but there was no association with mortality. 29,32 Family factors, including maternal education, marital status and country of birth, were not associated with adverse outcomes. 32 …”

Section: Individual and Family Factorsmentioning

confidence: 98%

“…The review included eight retrospective reviews of surgical cases, [23][24][25][26][27][28][29][30] four retrospective cohort studies, [31][32][33][34] two case-control studies 35,36 and one randomised controlled trial that was reported in two papers. 26,37 Only three studies 29,36,37 included a prospective element.…”

Section: Study Selectionmentioning

confidence: 99%

“…Two studies investigated postdischarge mortality after all types of cardiac surgery: Chang et al 31 reported a low mortality rate of 0.62% at 1 year after any cardiac surgery undertaken in children up to age 18 years, whereas Pinto et al 29 found a higher mortality rate of 8% in the 2 years following discharge after neonatal congenital heart surgery. Mortality rates over 10% were reported in studies focusing on specific higher-risk cardiac defect subgroups 32 or patients discharged home on mechanical ventilation. …”

Section: Adverse Outcomesmentioning

confidence: 99%

“…Ethnicity, 26,29,32,34 socioeconomic status 26,32,36 and non-cardiac malformations or genetic syndromes 32,34,36 were the most frequently evaluated individual factors. Hispanic ethnicity 14,19,23 and socioeconomic deprivation, as assessed through measures such as household income, 36 family income below the national poverty threshold 26 and deprivation index of the residential area 32 were highlighted as risk factors for mortality and unplanned hospital readmission in the US studies.…”

Section: Individual and Family Factorsmentioning

confidence: 99%

“…Hispanic ethnicity 14,19,23 and socioeconomic deprivation, as assessed through measures such as household income, 36 family income below the national poverty threshold 26 and deprivation index of the residential area 32 were highlighted as risk factors for mortality and unplanned hospital readmission in the US studies. Preterm birth 26,32 and low birthweight 23,32 were risk factors for mortality, but patient sex was not significantly associated with adverse outcomes. 24,31,32,35 Children living 90-300 minutes from the cardiac centre were at significantly lower risk of unplanned readmission 29 compared with families living under 90 minutes away, but there was no association with mortality.…”

Section: Individual and Family Factorsmentioning

confidence: 99%

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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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Section: Individual and Family Factorsmentioning

confidence: 98%

Section: Study Selectionmentioning

confidence: 99%

Section: Adverse Outcomesmentioning

confidence: 99%

Section: Individual and Family Factorsmentioning

confidence: 99%

Section: Individual and Family Factorsmentioning

confidence: 99%

See 3 more Smart Citations

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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Late Detection of Critical Congenital Heart Disease Among US Infants

et al. 2014

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IMPORTANCE Critical congenital heart disease (CCHD) was added to the Recommended Uniform Screening Panel for Newborns in the United States in 2011. Many states have recently adopted or are considering requirements for universal CCHD screening through pulse oximetry in birth hospitals. Limited previous research is directly applicable to the question of how many US infants with CCHD might be identified through screening. OBJECTIVES To estimate the proportion of US infants with late detection of CCHD (>3 days after birth) based on existing clinical practice and to investigate factors associated with late detection. DESIGN, SETTING, AND PARTICIPANTS Descriptive and multivariable analysis. Data were obtained from a multisite population-based study of birth defects in the United States, the National Birth Defects Prevention Study (NBDPS). We included all live-born infants with estimated dates of delivery from January 1, 1998, through December 31, 2007, and nonsyndromic, clinically verified CCHD conditions potentially detectable through screening via pulse oximetry. MAIN OUTCOMES AND MEASURES The main outcome measure was the proportion of infants with late detection of CCHD through echocardiography or at autopsy under the assumption that universal screening at birth hospitals might reduce the number of such late diagnoses. Secondary outcome measures included prevalence ratios for associations between selected demographic and clinical factors and late detection of CCHD. RESULTS Of 3746 live-born infants with nonsyndromic CCHD, late detection occurred in 1106 (29.5% [95%CI, 28.1%–31.0%]), including 6 (0.2%) (0.1% –0.4%) first receiving a diagnosis at autopsy more than 3 days after birth. Late detection varied by CCHD type from 9 of 120 infants (7.5%[95%CI, 3.5%–13.8%]) with pulmonary atresia to 497 of 801 (62.0% [58.7%–65.4%]) with coarctation of the aorta. In multivariable analysis, late detection varied significantly by CCHD type and study site, and infants with extracardiac defects were significantly less likely to have late detection of CCHD (adjusted prevalence ratio, 0.58 [95% CI, 0.49–0.69]). CONCLUSIONS AND RELEVANCE We estimate that 29.5%of live-born infants with nonsyndromic CCHD in the NBDPS received a diagnosis more than 3 days after birth and therefore might have benefited from routine CCHD screening at birth hospitals. The number of infants in whom CCHD was detected through screening likely varies by several factors, including CCHD type. Additional population-based studies of screening in practice are needed.

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Proximity to Pediatric Cardiac Surgical Care among Adolescents with Congenital Heart Defects in 11 New York Counties

Sommerhalter

Insaf

Akkaya-Hocagil

et al. 2017

Birth Defects Research

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Background Many individuals with congenital heart defects (CHDs) discontinue cardiac care in adolescence, putting them at risk of adverse health outcomes. Because geographic barriers may contribute to cessation of care, we sought to characterize geographic access to comprehensive cardiac care among adolescents with CHDs. Methods Using a population-based, 11-county surveillance system of CHDs in New York, we characterized proximity to the nearest pediatric cardiac surgical care center among adolescents aged 11 to 19 years with CHDs. Residential addresses were extracted from surveillance records documenting 2008 to 2010 healthcare encounters. Addresses were geocoded using ArcGIS and the New York State Street and Address Maintenance Program, a statewide address point database. One-way drive and public transit time from residence to nearest center were calculated using R packages gmapsdistance and rgeos with the Google Maps Distance Matrix application programming interface. A marginal model was constructed to identify predictors associated with one-way travel time. Results We identified 2522 adolescents with 3058 corresponding residential addresses and 12 pediatric cardiac surgical care centers. The median drive time from residence to nearest center was 18.3 min, and drive time was 30 min or less for 2475 (80.9%) addresses. Predicted drive time was longest for rural western addresses in high poverty census tracts (68.7 min). Public transit was available for most residences in urban areas but for few in rural areas. Conclusion We identified areas with geographic barriers to surgical care. Future research is needed to determine how these barriers influence continuity of care among adolescents with CHDs.

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Effect of Acculturation and Distance From Cardiac Center on Congenital Heart Disease Mortality

Abstract: Further studies are needed to determine if these disparities in survival of infants with severe CHD are attributable to delays in referral to a cardiac center.

Cited by 46 publications

References 16 publications

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

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

Late Detection of Critical Congenital Heart Disease Among US Infants

Proximity to Pediatric Cardiac Surgical Care among Adolescents with Congenital Heart Defects in 11 New York Counties

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