Actions in Support of Newborn Screening for Critical Congenital Heart Disease — United States, 2011–2018

Glidewell, Jill; Grosse, Scott D.; Riehle‐Colarusso, Tiffany; Pinto, Nelangi M.; Hudson, Jeff; Daskalov, Rachel; Gaviglio, Amy; Darby, Erin; Singh, Sikha; Sontag, Marci K.

doi:10.15585/mmwr.mm6805a3

Cited by 46 publications

(54 citation statements)

References 7 publications

(13 reference statements)

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“…State requirements for implementation and the status of states that have adopted CCHD screening as of March 12, 2015 are available (Appendix 1) (Reller et al 2008; Glidewell et al 2015). Legislative and statutory mandates for screening, data collection and reporting processes and requirements for state newborn screening programs are not uniform.…”

Section: Resultsmentioning

confidence: 99%

“…As the number of states engaging in CCHD screening has increased dramatically since 2011 (Glidewell et al 2015), potential solutions to the challenges expressed by the grantees and other state representatives may aid programs to fully implement CCHD screening and to engage in quality improvement activities. The insights provided in this report reflect the experiences of six grantees and complement the significant contributions to our current understanding of CCHD screening implementation made thus far by other organizations and programs (Appendix 1) (Reller et al 2008; Mahle et al 2009; Brown et al 2006; Liberman et al 2014; Peterson et al 2014; Kemper et al 2011; Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children 2015).…”

Section: Discussionmentioning

confidence: 99%

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Critical Congenital Heart Disease Newborn Screening Implementation: Lessons Learned

McClain

Hokanson

Grazel

et al. 2017

Matern Child Health J

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Introduction The purpose of this article is to present the collective experiences of six federally-funded critical congenital heart disease (CCHD) newborn screening implementation projects to assist federal and state policy makers and public health to implement CCHD screening. Methods A qualitative assessment and summary from six demonstration project grantees and other state representatives involved in the implementation of CCHD screening programs are presented in the following areas: legislation, provider and family education, screening algorithms and interpretation, data collection and quality improvement, telemedicine, home and rural births, and neonatal intensive care unit populations. Results The most common challenges to implementation include: lack of uniform legislative and statutory mandates for screening programs, lack of funding/resources, difficulty in screening algorithm interpretation, limited availability of pediatric echocardiography, and integrating data collection and reporting with existing newborn screening systems. Identified solutions include: programs should consider integrating third party insurers and other partners early in the legislative/statutory process; development of visual tools and language modification to assist in the interpretation of algorithms, training programs for adult sonographers to perform neonatal echocardiography, building upon existing newborn screening systems, and using automated data transfer mechanisms. Discussion Continued and expanded surveillance, research, prevention and education efforts are needed to inform screening programs, with an aim to reduce morbidity, mortality and other adverse consequences for individuals and families affected by CCHD.

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Section: Resultsmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Critical Congenital Heart Disease Newborn Screening Implementation: Lessons Learned

McClain

Hokanson

Grazel

et al. 2017

Matern Child Health J

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“…10,11 Subsequently, most US states implemented policies recommending or requiring screening. 11,12 As of August 9, 2016, 48 states had either enacted legislation or adopted regulations relating to pulse oximetry screening of newborns. 13 …”

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confidence: 99%

Association of US State Implementation of Newborn Screening Policies for Critical Congenital Heart Disease With Early Infant Cardiac Deaths

Abouk

Grosse

Ailes

et al. 2017

JAMA

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125

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IMPORTANCE In 2011, critical congenital heart disease was added to the US Recommended Uniform Screening Panel for newborns, but whether state implementation of screening policies has been associated with infant death rates is unknown. OBJECTIVE To assess whether there was an association between implementation of state newborn screening policies for critical congenital heart disease and infant death rates. DESIGN, SETTING, AND PARTICIPANTS Observational study with group-level analyses. A difference-in-differences analysis was conducted using the National Center for Health Statistics’ period linked birth/infant death data set files for 2007–2013 for 26 546 503 US births through June 30, 2013, aggregated by month and state of birth. EXPOSURES State policies were classified as mandatory or nonmandatory (including voluntary policies and mandates that were not yet implemented). As of June 1, 2013, 8 states had implemented mandatory screening policies, 5 states had voluntary screening policies, and 9 states had adopted but not yet implemented mandates. MAIN OUTCOMES AND MEASURES Numbers of early infant deaths (between 24 hours and 6 months of age) coded for critical congenital heart disease or other/unspecified congenital cardiac causes for each state-month birth cohort. RESULTS Between 2007 and 2013, there were 2734 deaths due to critical congenital heart disease and 3967 deaths due to other/unspecified causes. Critical congenital heart disease death rates in states with mandatory screening policies were 8.0 (95% CI, 5.4–10.6) per 100 000 births (n = 37) in 2007 and 6.4 (95% CI, 2.9–9.9) per 100 000 births (n = 13) in 2013 (for births by the end of July); for other/unspecified cardiac causes, death rates were 11.7 (95% CI, 8.6–14.8) per 100 000 births in 2007 (n = 54) and 10.3 (95% CI, 5.9–14.8) per 100 000 births (n = 21) in 2013. Early infant deaths from critical congenital heart disease through December 31, 2013, decreased by 33.4% (95% CI, 10.6%–50.3%), with an absolute decline of 3.9 (95% CI, 3.6–4.1) deaths per 100 000 births after states implemented mandatory screening compared with prior periods and states without screening policies. Early infant deaths from other/unspecified cardiac causes declined by 21.4% (95% CI, 6.9%–33.7%), with an absolute decline of 3.5 (95% CI, 3.2–3.8) deaths per 100 000 births. No significant decrease was associated with nonmandatory screening policies. CONCLUSIONS AND RELEVANCE Statewide implementation of mandatory policies for newborn screening for critical congenital heart disease was associated with a significant decrease in infant cardiac deaths between 2007 and 2013 compared with states without these policies.

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“…Multidisciplinary workgroups addressing recommendations for implementing CCHD screening have noted that birth facilities and public health programs have differing data requirements, and that these contrasting needs may interfere with effective evaluation of these screening programs (Aamir et al, ; Kemper et al, ; Martin et al, ; Johnson et al, ; Glidewell et al, ). Our results are consistent with this and strengthen recommendations that pulse oximetry screening results should become a standard field in every hospital's electronic health records (Kemper et al, ; Kochilas et al, ; Martin et al, ; Glidewell et al, ). In a study of 71 Georgia hospitals, considerable variation in reporting methods was reported, and 9% of hospitals currently screening cited documentation of results as a barrier to screening (CDC, ).…”

Section: Discussionmentioning

confidence: 99%

Using State Birth Defects Registries to Evaluate Regional Critical Congenital Heart Disease Newborn Screening

Case¹,

Miller²,

McClain

2017

Birth Defects Research

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Birth defects surveillance systems can provide information on outcomes for infants with CCHDs. However, information varies by surveillance method and by hospital practices. Engaging hospitals in standardizing recording procedures and enhancing training and quality control could increase the value of birth defects registries records in assessing outcomes for children identified through CCHD screening. Birth Defects Research 109:1414-1422, 2017.© 2017 Wiley Periodicals, Inc.

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Actions in Support of Newborn Screening for Critical Congenital Heart Disease — United States, 2011–2018

Cited by 46 publications

References 7 publications

Critical Congenital Heart Disease Newborn Screening Implementation: Lessons Learned

Critical Congenital Heart Disease Newborn Screening Implementation: Lessons Learned

Association of US State Implementation of Newborn Screening Policies for Critical Congenital Heart Disease With Early Infant Cardiac Deaths

Using State Birth Defects Registries to Evaluate Regional Critical Congenital Heart Disease Newborn Screening

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