Last data update: Apr 22, 2024. (Total: 46599 publications since 2009)
Records 1-21 (of 21 Records) |
Query Trace: Glidewell J [original query] |
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Factors affecting maternal participation in the genetic component of the National Birth Defects Prevention Study-United States, 1997-2007.
Glidewell J , Reefhuis J , Rasmussen SA , Woomert A , Hobbs C , Romitti PA , Crider KS . Genet Med 2014 16 (4) 329-37 PURPOSE: As epidemiological studies expand to examine gene-environment interaction effects, it is important to identify factors associated with participation in genetic studies. The National Birth Defects Prevention Study is a multisite case-control study designed to investigate environmental and genetic risk factors for major birth defects. The National Birth Defects Prevention Study includes maternal telephone interviews and mailed buccal cell self-collection kits. Because subjects can participate in the interview, independent of buccal cell collection, detailed analysis of factors associated with participation in buccal cell collection was possible. METHODS: Multivariable logistic regression models were used to identify the factors associated with participation in the genetic component of the study. RESULTS: Buccal cell participation rates varied by race/ethnicity (non-Hispanic whites, 66.9%; Hispanics, 60.4%; and non-Hispanic blacks, 47.3%) and study site (50.2-74.2%). Additional monetary incentive following return of buccal cell kit and shorter interval between infant's estimated date of delivery and interview were associated with increased participation across all racial/ethnic groups. Higher education and delivering an infant with a birth defect were associated with increased participation among non-Hispanic whites and Hispanics. CONCLUSION: Factors associated with participation varied by race/ethnicity. Improved understanding of factors associated with participation may facilitate strategies to increase participation, thereby improving generalizability of study findings. |
CDC Grand Rounds: Newborn screening and improved outcomes.
Howell RR , Terry S , Tait VF , Olney R , Hinton CF , Grosse S , Eichwald J , Cuthbert C , Popovic T , Glidewell J . MMWR Morb Mortal Wkly Rep 2012 61 (21) 390-3 Newborn screening is the practice of testing every newborn for certain harmful or potentially fatal conditions, such as hearing loss and certain genetic, endocrine, and metabolic disorders that typically are not otherwise apparent at birth. Newborn screening in the United States began in the 1960s. Universal newborn screening has become a well-established, state-based, public health system involving education, screening, diagnostic follow-up, treatment and management, and system monitoring and evaluation. Each year, >98% of approximately 4 million newborns in the United States are screened. Through early identification, newborn screening provides an opportunity for treatment and significant reductions in morbidity and mortality. |
Bullying among children with heart conditions, National Survey of Children's Health, 2018-2020
Wright BN , Glidewell MJ , Downing KF , Vagi KJ , Fundora MP , Farr SL . Cardiol Young 2023 1-9 Children with chronic illnesses report being bullied by peers, yet little is known about bullying among children with heart conditions. Using 2018-2020 National Survey of Children's Health data, the prevalence and frequency of being bullied in the past year (never; annually or monthly; weekly or daily) were compared between children aged 6-17 years with and without heart conditions. Among children with heart conditions, associations between demographic and health characteristics and being bullied, and prevalence of diagnosed anxiety or depression by bullying status were examined. Differences were assessed with chi-square tests and multivariable logistic regression using predicted marginals to produce adjusted prevalence ratios and 95% confidence intervals. Weights yielded national estimates. Of 69,428 children, 2.2% had heart conditions. Children with heart conditions, compared to those without, were more likely to be bullied (56.3% and 43.3% respectively; adjusted prevalence ratio [95% confidence interval] = 1.3 [1.2, 1.4]) and bullied more frequently (weekly or daily = 11.2% and 5.3%; p < 0.001). Among children with heart conditions, characteristics associated with greater odds of weekly or daily bullying included ages 9-11 years compared to 15-17 years (3.4 [2.0, 5.7]), other genetic or inherited condition (1.7 [1.0, 3.0]), ever overweight (1.7 [1.0, 2.8]), and a functional limitation (4.8 [2.7, 8.5]). Children with heart conditions who were bullied, compared to never, more commonly had anxiety (40.1%, 25.9%, and 12.8%, respectively) and depression (18.0%, 9.3%, and 4.7%; p < 0.01 for both). Findings highlight the social and psychological needs of children with heart conditions. |
Reproductive health of women with congenital heart defects
Farr SL , Downing KF , Tepper NK , Oster ME , Glidewell MJ , Reefhuis J . J Womens Health (Larchmt) 2023 32 (2) 132-137 This report provides an overview of the unique reproductive health issues facing women with congenital heart defects (CHDs) and of the clinical care and professional guidelines on contraception, preconception care, and pregnancy for this population. It describes Centers for Disease Control and Prevention (CDC) activities related to surveillance of reproductive health issues among females with CHDs. It also describes CDC's work bringing awareness to physicians who provide care to adolescents and women with CHDs, including obstetrician/gynecologists, about the need for lifelong cardiology care for their patients with CHDs. |
Health care usage among adolescents with congenital heart defects at 5 sites in the United States, 2011 to 2013
Lui GK , Sommerhalter K , Xi Y , Botto LD , Crume T , Farr S , Feldkamp ML , Glidewell J , Hsu D , Khanna A , Krikov S , Li J , Raskind-Hood C , Sarno L , Van Zutphen AR , Zaidi A , Soim A , Book WM . J Am Heart Assoc 2022 11 (18) e026172 Background We sought to characterize health care usage for adolescents with congenital heart defects (CHDs) using population-based multisite surveillance data. Methods and Results Adolescents aged 11 to 18 years with ≥1 CHD-related diagnosis code and residing in 5 US sites were identified in clinical and administrative data sources for the years 2011 to 2013. Sites linked data on all inpatient, emergency department (ED), and outpatient visits. Multivariable log-binomial regression models including age, sex, unweighted Charlson comorbidity index, CHD severity, cardiology visits, and insurance status, were used to identify associations with inpatient, ED, and outpatient visits. Of 9626 eligible adolescents, 26.4% (n=2543) had severe CHDs and 21.4% had Charlson comorbidity index >0. At least 1 inpatient, ED, or outpatient visit was reported for 21%, 25%, and 96% of cases, respectively. Cardiology visits, cardiac imaging, cardiac procedures, and vascular procedures were reported for 38%, 73%, 10%, and 5% of cases, respectively. Inpatient, ED, and outpatient visits were consistently higher for adolescents with severe CHDs compared with nonsevere CHDs. Adolescents with severe and nonsevere CHDs had higher health care usage compared with the 2011 to 2013 general adolescent US population. Adolescents with severe CHDs versus nonsevere CHDs were twice as likely to have at least 1 inpatient visit when Charlson comorbidity index was low (Charlson comorbidity index =0). Adolescents with CHDs and public insurance, compared with private insurance, were more likely to have inpatient (adjusted prevalence ratio, 1.5 [95% CI, 1.3-1.7]) and ED (adjusted prevalence ratio, 1.6 [95% CI, 1.4-1.7]) visits. Conclusions High resource usage by adolescents with CHDs indicates a substantial burden of disease, especially with public insurance, severe CHDs, and more comorbidities. |
How well do ICD-9-CM codes predict true congenital heart defects A Centers For Disease Control And Prevention-based multisite validation project
Rodriguez FH3rd , Raskind-Hood CL , Hoffman T , Farr SL , Glidewell J , Li JS , D'Ottavio A , Botto L , Reeder MR , Hsu D , Lui GK , Sullivan AM , Book WM . J Am Heart Assoc 2022 11 (15) e024911 Background The Centers for Disease Control and Prevention's Surveillance of Congenital Heart Defects Across the Lifespan project uses large clinical and administrative databases at sites throughout the United States to understand population-based congenital heart defect (CHD) epidemiology and outcomes. These individual databases are also relied upon for accurate coding of CHD to estimate population prevalence. Methods and Results This validation project assessed a sample of 774 cases from 4 surveillance sites to determine the positive predictive value (PPV) for identifying a true CHD case and classifying CHD anatomic group accurately based on 57 International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) codes. Chi-square tests assessed differences in PPV by CHD severity and age. Overall, PPV was 76.36% (591/774 [95% CI, 73.20-79.31]) for all sites and all CHD-related ICD-9-CM codes. Of patients with a code for complex CHD, 89.85% (177/197 [95% CI, 84.76-93.69]) had CHD; corresponding PPV estimates were 86.73% (170/196 [95% CI, 81.17-91.15]) for shunt, 82.99% (161/194 [95% CI, 76.95-87.99]) for valve, and 44.39% (83/187 [95% CI, 84.76-93.69]) for "Other" CHD anatomic group (X(2)=142.16, P<0.0001). ICD-9-CM codes had higher PPVs for having CHD in the 3 younger age groups compared with those >64 years of age, (X(2)=4.23, P<0.0001). Conclusions While CHD ICD-9-CM codes had acceptable PPV (86.54%) (508/587 [95% CI, 83.51-89.20]) for identifying whether a patient has CHD when excluding patients with ICD-9-CM codes for "Other" CHD and code 745.5, further evaluation and algorithm development may help inform and improve accurate identification of CHD in data sets across the CHD ICD-9-CM code groups. |
Individuals aged 1-64 years with documented congenital heart defects at healthcare encounters, five U.S. surveillance sites, 2011-2013
Glidewell MJ , Farr SL , Book WM , Botto L , Li JS , Soim AS , Downing KF , Riehle-Colarusso T , D'Ottavio AA , Feldkamp ML , Khanna AD , Raskind-Hood CL , Sommerhalter KM , Crume TL . Am Heart J 2021 238 100-108 BACKGROUND: Many individuals born with CHD survive to adulthood. However, population estimates of CHD beyond early childhood are limited in the U.S. OBJECTIVES: To estimate the percentage of individuals aged 1-to-64 years at five U.S. sites with CHD documented at a healthcare encounter during a three-year period and describe their characteristics. METHODS: Sites conducted population-based surveillance of CHD among 1 to 10-year-olds (three sites) and 11 to 64-year-olds (all five sites) by linking healthcare data. Eligible cases resided in the population catchment areas and had one or more healthcare encounters during the surveillance period (1/1/11-12/31/13) with a CHD-related ICD-9-CM code. Site-specific population census estimates from the same age groups and time period were used to assess percentage of individuals in the catchment area with a CHD-related ICD-9-CM code documented at a healthcare encounter (hereafter referred to as CHD cases). Severe and non-severe CHD were based on an established mutually exclusive anatomic hierarchy. RESULTS: Among 42,646 CHD cases, 23.7% had severe CHD and 51.5% were male. Percentage of CHD cases among 1 to 10-year olds, was 6.36/1,000 (range: 4.33 to 9.96/1,000) but varied by CHD severity [severe: 1.56/1,000 (range: 1.04 to 2.64/1,000); non-severe: 4.80/1,000 (range: 3.28 to 7.32/1,000)]. Percentage of cases across all sites in 11 to 64-year-olds was 1.47/1,000 (range: 1.02 to 2.18/1,000) and varied by CHD severity [severe: 0.34/1,000 (range: 0.26 to 0.49/1,000); non-severe: 1.13/1,000 (range: 0.76 to 1.69/1,000)]. Percentage of CHD cases decreased with age until 20-44 years and, for non-severe CHD only, increased slightly for ages 45-64 years. CONCLUSION: CHD cases varied by site, CHD severity, and age. These findings will inform planning for the needs of this growing population. |
Characteristics of adults with congenital heart defects in the United States
Gurvitz M , Dunn JE , Bhatt A , Book WM , Glidewell J , Hogue C , Lin AE , Lui G , McGarry C , Raskind-Hood C , Van Zutphen A , Zaidi A , Jenkins K , Riehle-Colarusso T . J Am Coll Cardiol 2020 76 (2) 175-182 BACKGROUND: In the United States, >1 million adults are living with congenital heart defects (CHDs), but gaps exist in understanding the health care needs of this growing population. OBJECTIVES: This study assessed the demographics, comorbidities, and health care use of adults ages 20 to 64 years with CHDs. METHODS: Adults with International Classification of Disease-9th Revision-Clinical Modification CHD-coded health care encounters between January 1, 2008 (January 1, 2009 for Massachusetts) and December 31, 2010 were identified from multiple data sources at 3 U.S. sites: Emory University (EU) in Atlanta, Georgia (5 counties), Massachusetts Department of Public Health (statewide), and New York State Department of Health (11 counties). Demographics, insurance type, comorbidities, and encounter data were collected. CHDs were categorized as severe or not severe, excluding cases with isolated atrial septal defect and/or patent foramen ovale. RESULTS: CHD severity and comorbidities varied across sites, with up to 20% of adults having severe CHD and >50% having ≥1 additional cardiovascular comorbidity. Most adults had ≥1 outpatient encounters (80% EU, 90% Massachusetts, and 53% New York). Insurance type differed across sites, with Massachusetts having a large proportion of Medicaid (75%) and EU and New York having large proportions of private insurance (44% EU, 67% New York). Estimated proportions of adults with CHD-coded health care encounters varied greatly by location, with 1.2 (EU), 10 (Massachusetts), and 0.6 (New York) per 1,000 adults based on 2010 census data. CONCLUSIONS: This was the first surveillance effort of adults with CHD-coded inpatient and outpatient health care encounters in 3 U.S. geographic locations using both administrative and clinical data sources. This information will provide a clearer understanding of health care use in this growing population. |
Health care transition perceptions among parents of adolescents with congenital heart defects in Georgia and New York
Gaydos LM , Sommerhalter K , Raskind-Hood C , Fapo O , Lui G , Hsu D , Van Zutphen A , Glidewell J , Farr S , Rodriguez FH3rd , Hoffman T , Book W . Pediatr Cardiol 2020 41 (6) 1220-1230 With increasing survival trends for children and adolescents with congenital heart defects (CHD), there is a growing need to focus on transition from pediatric to adult specialty cardiac care. To better understand parental perspectives on the transition process, a survey was distributed to 451 parents of adolescents with CHD who had recent contact with the healthcare system in Georgia (GA) and New York (NY). Among respondents, 90.7% reported excellent, very good or good health-related quality of life (HRQoL) for their adolescent. While the majority of parents (77.8%) had been told by a provider about their adolescent's need to transition to adult specialty cardiac care, most reported concerns about transitioning to adult care. Parents were most commonly concerned with replacing the strong relationship with pediatric providers (60.7%), locating an appropriate adult provider (48.7%), and accessing adult health insurance coverage (43.6%). These findings may offer insights into transition planning for adolescents with CHD. |
Rationale and design of CH STRONG: Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG
Farr SL , Klewer SE , Nembhard WN , Alter C , Downing KF , Andrews JG , Collins RT , Glidewell J , Benavides A , Goudie A , Riehle-Colarusso T , Overman L , Riser AP , Oster ME . Am Heart J 2020 221 106-113 Studies of outcomes among adults with congenital heart defects (CHDs) have focused on those receiving cardiac care, limiting generalizability. The Congenital Heart Survey To Recognize Outcomes, Needs, and well-beinG (CH STRONG) will assess comorbidities, health care utilization, quality of life, and social and educational outcomes from a US population-based sample of young adults living with CHD. METHODS: Individuals with CHD born between 1980 and 1997 were identified using active, population-based birth defects surveillance systems from 3 US locations (Arkansas [AR]; Arizona [AZ]; and Atlanta, Georgia [GA]) linked to death records. Individuals with current contact information responded to mailed survey materials during 2016 to 2019. Respondents and nonrespondents were compared using chi(2) tests. RESULTS: Sites obtained contact information for 74.6% of the 9,312 eligible individuals alive at recruitment. Of those, 1,656 returned surveys, either online (18.1%) or via paper (81.9%), for a response rate of 23.9% (AR: 18.3%; AZ: 30.7%; Atlanta, GA: 28.0%; P value < .01). For 20.0% of respondents, a proxy completed the survey, with 63.9% reporting that the individual with CHD was mentally unable. Among respondents and nonrespondents, respectively, sex (female: 54.0% and 47.3%), maternal race/ethnicity (non-Hispanic white: 74.3% and 63.0%), CHD severity (severe: 33.8% and 27.9%), and noncardiac congenital anomalies (34.8% and 38.9%) differed significantly (P value < .01); birth year (1991-1997: 56.0% and 57.5%) and presence of Down syndrome (9.2% and 8.9%) did not differ. CONCLUSIONS: CH STRONG will provide the first multisite, population-based findings on long-term outcomes among the growing population of US adults with CHD. |
Assessing pregnancy, gestational complications, and co-morbidities in women with congenital heart defects (Data from ICD-9-CM Codes in 3 US Surveillance Sites)
Raskind-Hood C , Saraf A , Riehle-Colarusso T , Glidewell J , Gurvitz M , Dunn JE , Lui GK , Van Zutphen A , McGarry C , Hogue CJ , Hoffman T , Rodriguez Iii FH , Book WM . Am J Cardiol 2019 125 (5) 812-819 Improved treatment of congenital heart defects (CHDs) has resulted in women with CHDs living to childbearing age. However, no US population-based systems exist to estimate pregnancy frequency or complications among women with CHDs. Cases were identified in multiple data sources from 3 surveillance sites: Emory University (EU) whose catchment area included 5 metropolitan Atlanta counties; Massachusetts Department of Public Health (MA) whose catchment area was statewide; and New York State Department of Health (NY) whose catchment area included 11 counties. Cases were categorized into one of 5 mutually exclusive CHD severity groups collapsed to severe versus not severe; specific ICD-9-CM codes were used to capture pregnancy, gestational complications, and nongestational co-morbidities in women, age 11 to 50 years, with a CHD-related ICD-9-CM code. Pregnancy, CHD severity, demographics, gestational complications, co-morbidities, and insurance status were evaluated. ICD-9-CM codes identified 26,655 women with CHDs, of whom 5,672 (21.3%, range: 12.8% in NY to 22.5% in MA) had codes indicating a pregnancy. Over 3 years, age-adjusted proportion pregnancy rates among women with severe CHDs ranged from 10.0% to 24.6%, and 14.2% to 21.7% for women with nonsevere CHDs. Pregnant women with CHDs of any severity, compared with nonpregnant women with CHDs, reported more noncardiovascular co-morbidities. Insurance type varied by site and pregnancy status. These US population-based, multisite estimates of pregnancy among women with CHD indicate a substantial number of women with CHDs may be experiencing pregnancy and complications. In conclusion, given the growing adult population with CHDs, reproductive health of women with CHD is an important public health issue. |
Surveillance of congenital heart defects among adolescents at three U.S. sites
Lui GK , McGarry C , Bhatt A , Book W , Riehle-Colarusso TJ , Dunn JE , Glidewell J , Gurvitz M , Hoffman T , Hogue CJ , Hsu D , Obenhaus S , Raskind-Hood C , Rodriguez FH 3rd , Zaidi A , Van Zutphen AR . Am J Cardiol 2019 124 (1) 137-143 The prevalence, co-morbidities, and healthcare utilization in adolescents with congenital heart defects (CHDs) is not well understood. Adolescents (11 to 19 years old) with a healthcare encounter between January 1, 2008 (January 1, 2009 for MA) and December 31, 2010 with a CHD diagnosis code were identified from multiple administrative data sources compiled at 3 US sites: Emory University, Atlanta, Georgia (EU); Massachusetts Department of Public Health (MA); and New York State Department of Health (NY). The estimated prevalence for any CHD was 4.77 (EU), 17.29 (MA), and 4.22 (NY) and for severe CHDs was 1.34 (EU), 3.04 (MA), and 0.88 (NY) per 1,000 adolescents. Private or commercial insurance was the most common insurance type for EU and NY, and Medicaid for MA. Inpatient encounters were more frequent in severe CHDs. Cardiac co-morbidities included rhythm and conduction disorders at 20% (EU), 46% (MA), and 9% (NY) as well as heart failure at 3% (EU), 15% (MA), and 2% (NY). Leading noncardiac co-morbidities were respiratory/pulmonary (22% EU, 34% MA, 16% NY), infectious disease (17% EU, 22% MA, 20% NY), non-CHD birth defects (12% EU, 23% MA, 14% NY), gastrointestinal (10% EU, 28% MA, 13% NY), musculoskeletal (10% EU, 32% MA, 11% NY), and mental health (9% EU, 30% MA, 11% NY). In conclusion, this study used a novel approach of uniform CHD definition and variable selection across administrative data sources in 3 sites for the first population-based CHD surveillance of adolescents in the United States. High resource utilization and co-morbidities illustrate ongoing significant burden of disease in this vulnerable population. |
Actions in support of newborn screening for critical congenital heart disease - United States, 2011-2018
Glidewell J , Grosse SD , Riehle-Colarusso T , Pinto N , Hudson J , Daskalov R , Gaviglio A , Darby E , Singh S , Sontag M . MMWR Morb Mortal Wkly Rep 2019 68 (5) 107-111 In 2011, the U.S. Department of Health and Human Services added critical congenital heart disease (CCHD), which occurs in two of every 1,000 births, to the list of conditions recommended to states for universal newborn screening (1). Without early detection, infants with CCHD are at risk for substantial morbidity and death in the first weeks and months of life (2). Based on 2007-2013 data, deaths from CCHD and other cardiac causes in infants aged <6 months significantly declined in infants born in eight states after they had fully implemented mandated newborn CCHD screening policies by June 2013 (3). CDC collaborated with the American Academy of Pediatrics (AAP) and the Association of Public Health Laboratories' Newborn Screening Technical Assistance and Evaluation Program (NewSTEPs) to update a 2015 report (4) on states' actions toward adopting and implementing policies supporting CCHD newborn screening. In 2018, all 50 states and the District of Columbia (DC) had implemented CCHD screening policies, and, with one exception, all states mandated that screening be done (California mandates that screening be offered). However, not all states had data systems in place for tracking all screening results and outcomes. Ongoing evaluation activities, which rely on screening data, could help identify program improvement opportunities and monitor the impact of early identification of CCHD. |
Are low to moderate average alcohol consumption and isolated episodes of binge drinking in early pregnancy associated with facial features related to fetal alcohol syndrome in five-year-old children
Kesmodel US , Nygaard SS , Mortensen EL , Bertrand J , Denny CH , Glidewell A , Astley Hemingway S . Alcohol Clin Exp Res 2019 43 (6) 1199-1212 BACKGROUND: Fetal alcohol syndrome (FAS) typically is observed among individuals with high prenatal alcohol exposures (PAE), but exposure histories obtained in clinical diagnostic settings are often inaccurate. The present analysis used the Lifestyle During Pregnancy Study (LDPS) to assess the potential effects of low to moderate average weekly alcohol consumption and binge drinking in early pregnancy on facial features associated with FAS among children five years of age. METHODS: The analysis is a prospective follow-up study of 670 women and their children sampled from the LDPS cohort based on maternal alcohol consumption during pregnancy. The 4-Digit Code FAS Facial Photographic software was used to measure the magnitude of expression of the three diagnostic facial features of FAS from standardized digital photographs. Logistic regression was used to estimate the odds of presenting with the FAS/Partial FAS (PFAS) facial phenotypes relative to different patterns of prenatal alcohol exposure. RESULTS: Ten children presented with the FAS/PFAS facial phenotypes. None of the children sampled met the central nervous system (CNS) criteria for FAS or PFAS at age 5 years. All remained at risk for PFAS since some types of CNS dysfunction associated with this diagnosis may only be assessed at older ages. The FAS/PFAS facial phenotypes were 8.5-fold more likely among children exposed to an average of 1-4 drinks per week, and 2.5-fold more likely among children with a single binge exposure in gestational weeks 3-4 compared to children with no such exposures. The magnitude of expression of the FAS facial phenotype was significantly correlated with all other diagnostic features of FAS: growth deficiency, microcephaly, and measures of CNS dysfunction. CONCLUSIONS: These findings suggest that low to moderate levels of PAE or isolated binge exposures may place some fetuses at risk for FAS/PFAS. Thus, conservative advice is still for women to abstain from alcohol consumption during pregnancy. This article is protected by copyright. All rights reserved. |
Population-based surveillance of congenital heart defects among adolescents and adults: surveillance methodology
Glidewell J , Book W , Raskind-Hood C , Hogue C , Dunn JE , Gurvitz M , Ozonoff A , McGarry C , Van Zutphen A , Lui G , Downing K , Riehle-Colarusso T . Birth Defects Res 2018 110 (19) 1395-1403 BACKGROUND: Improved treatment of congenital heart defects (CHDs) has increased survival of persons with CHDs; however, no U.S. population-based systems exist to assess prevalence, healthcare utilization, or longer-term outcomes among adolescents and adults with CHDs. METHODS: Novel approaches identified individuals aged 11-64 years who received healthcare with ICD-9-CM codes for CHDs at three sites: Emory University in Atlanta, Georgia (EU), Massachusetts Department of Public Health (MA), New York State Department of Health (NY) between January 1, 2008 (2009 for MA) and December 31, 2010. Case-finding sources included outpatient clinics; Medicaid and other claims data; and hospital inpatient, outpatient, and emergency visit data. Supplemental information came from state vital records (EU, MA), and birth defects registries (EU, NY). Demographics and diagnostic and procedural codes were linked, de-duplicated, and shared in a de-identified dataset. Cases were categorized into one of five mutually exclusive CHD severity groups; non-cardiac comorbidity codes were grouped into broad categories. RESULTS: 73,112 individuals with CHD codes in healthcare encounters were identified. Primary data source type varied: clinics (EU, NY for adolescents), claims (MA), hospital (NY for adults). There was a high rate of missing data for some variables and data varied in format and quality. Some diagnostic codes had poor specificity for CHD ascertainment. CONCLUSIONS: To our knowledge, this is the first population-based, multi-site CHD surveillance among adolescents and adults in the U.S. Identification of people living with CHDs through healthcare encounters using multiple data sources was feasible, though data quality varied and linkage/de-duplication was labor-intensive. |
Financial burdens and mental health needs in families of children with congenital heart disease
McClung N , Glidewell J , Farr SL . Congenit Heart Dis 2018 13 (4) 554-562 OBJECTIVE: To examine the financial burdens and mental health needs of families of children with special healthcare needs (CSHCN) with congenital heart disease (CHD). METHODS: Data from the 2009-2010 National Survey of Children with Special Health Care Needs (NS-CSHCN) were used to examine parent-reported financial burdens (out-of-pocket expenses, financial problems, employment impact, caregiving hours) and family members' need for mental health services in families of CSHCN with CHD. Multivariable logistic regression was used to compare financial burdens and family members' need for mental health services among CSHCN with and without CHD. Among CSHCN with CHD, multivariable logistic regression, stratified by age (0-5 and 6-17 years), was used to assess characteristics associated with the outcomes. RESULTS: Overall, families of 89.1% of CSHCN with CHD experienced at least one financial burden and 14.9% needed mental health services due to the child's condition. Compared with CSHCN without CHD, those with CHD had families with a higher prevalence of all financial burdens (adjusted prevalence ratio [aPR] range: 1.4-1.8) and similar family member need for mental health services (aPR = 1.3, 95% CI [1.0, 1.6]). Across both age groups, insurance type, activity limitations, and comorbidities were significantly associated with financial burdens and/or family members' need for mental health services. CONCLUSIONS: CSHCN with CHD, compared with those without CHD, lived in families with more financial burdens. Interventions that reduce financial burdens and improve mental health of family members are needed, especially among CSHCN with CHD who are uninsured and have comorbidities or activity limitations. |
Cost and cost-effectiveness assessments of newborn screening for critical congenital heart disease using pulse oximetry: A review
Grosse SD , Peterson C , Abouk R , Glidewell J , Oster ME . Int J Neonatal Screen 2017 3 (4) 34 Screening newborns for critical congenital heart disease (CCHD) using pulse oximetry is recommended to allow for the prompt diagnosis and prevention of life-threatening crises. The present review summarizes and critiques six previously published estimates of the costs or cost-effectiveness of CCHD screening from the United Kingdom, United States, and China. Several elements that affect CCHD screening costs were assessed in varying numbers of studies, including screening staff time, instrumentation, and consumables, as well as costs of diagnosis and treatment. A previous US study that used conservative assumptions suggested that CCHD screening is likely to be considered cost-effective from the healthcare sector perspective. Newly available estimates of avoided infant CCHD deaths in several US states that implemented mandatory CCHD screening policies during 2011-2013 suggest a substantially larger reduction in deaths than was projected in the previous US cost-effectiveness analysis. Taking into account these new estimates, we estimate that cost per life-year gained could be as low as USD 12,000. However, that estimate does not take into account future costs of health care and education for surviving children with CCHD nor the costs incurred by health departments to support and monitor CCHD screening policies and programs. |
Lessons learned from newborn screening for critical congenital heart defects
Oster ME , Aucott SW , Glidewell J , Hackell J , Kochilas L , Martin GR , Phillippi J , Pinto NM , Saarinen A , Sontag M , Kemper AR . Pediatrics 2016 137 (5) Newborn screening for critical congenital heart defects (CCHD) was added to the US Recommended Uniform Screening Panel in 2011. Within 4 years, 46 states and the District of Columbia had adopted it into their newborn screening program, leading to CCHD screening being nearly universal in the United States. This rapid adoption occurred while there were still questions about the effectiveness of the recommended screening protocol and barriers to follow-up for infants with a positive screen. In response, the Centers for Disease Control and Prevention partnered with the American Academy of Pediatrics to convene an expert panel between January and September 2015 representing a broad array of primary care, neonatology, pediatric cardiology, nursing, midwifery, public health, and advocacy communities. The panel's goal was to review current practices in newborn screening for CCHD and to identify opportunities for improvement. In this article, we describe the experience of CCHD screening in the United States with regard to: (1) identifying the target lesions for CCHD screening; (2) optimizing the algorithm for screening; (3) determining state-level challenges to implementation and surveillance of CCHD; (4) educating all stakeholders; (5) performing screening using the proper equipment and in a cost-effective manner; and (6) implementing screening in special settings such as the NICU, out-of-hospital settings, and areas of high altitude. |
State legislation, regulations, and hospital guidelines for newborn screening for critical congenital heart defects - United States, 2011-2014
Glidewell J , Olney RS , Hinton C , Pawelski J , Sontag M , Wood T , Kucik JE , Daskalov R , Hudson J . MMWR Morb Mortal Wkly Rep 2015 64 (23) 625-630 Critical congenital heart defects (CCHD) occur in approximately two of every 1,000 live births. Newborn screening provides an opportunity for reducing infant morbidity and mortality. In September 2011, the U.S. Department of Health and Human Services (HHS) Secretary endorsed the recommendation that critical congenital heart defects be added to the Recommended Uniform Screening Panel (RUSP) for all newborns. In 2014, CDC collaborated with the American Academy of Pediatrics (AAP) Division of State Government Affairs and the Newborn Screening Technical Assistance and Evaluation Program (NewSTEPs) to assess states' actions for adopting newborn screening for CCHD. Forty-three states have taken action toward newborn screening for CCHD through legislation, regulations, or hospital guidelines. Among those 43, 32 (74%) are collecting or planning to collect CCHD screening data; however, the type of data collected by CCHD newborn screening programs varies by state. State mandates for newborn screening for CCHD will likely increase the number of newborns screened, allowing for the possibility of early identification and prevention of morbidity and mortality. Data collection at the state level is important for surveillance, monitoring of outcomes, and evaluation of state CCHD newborn screening programs. |
A public health economic assessment of hospitals' cost to screen newborns for critical congenital heart disease
Peterson C , Grosse SD , Glidewell J , Garg LF , Van Naarden Braun K , Knapp MM , Beres LM , Hinton CF , Olney RS , Cassell CH . Public Health Rep 2014 129 (1) 86-93 OBJECTIVE: Critical congenital heart disease (CCHD) was recently added to the U.S. Recommended Uniform Screening Panel for newborns. This evaluation aimed to estimate screening time and hospital cost per newborn screened for CCHD using pulse oximetry as part of a public health economic assessment of CCHD screening. METHODS: A cost survey and time and motion study were conducted in well-newborn and special/intensive care nurseries in a random sample of seven birthing hospitals in New Jersey, where the state legislature mandated CCHD screening in 2011. The sample was stratified by hospital facility level, hospital birth census, and geographic location. At the time of the evaluation, all hospitals had conducted CCHD screening for at least four months. RESULTS: Mean screening time per newborn was 9.1 (standard deviation = 3.4) minutes. Hospitals' total mean estimated cost per newborn screened was $14.19 (in 2011 U.S. dollars), consisting of $7.36 in labor costs and $6.83 in equipment and supply costs. CONCLUSIONS: This federal agency-state health department collaborative assessment is the first state-level analysis of time and hospital costs for CCHD screening using pulse oximetry conducted in the U.S. Hospitals' cost per newborn screened for CCHD with pulse oximetry is comparable with cost estimates of existing newborn screening tests. Hospitals' equipment costs varied substantially based on the pulse oximetry technology employed, with lower costs among hospitals that used reusable screening sensors. In combination with estimates of screening accuracy, effectiveness, and avoided costs, information from this evaluation suggests that CCHD screening is cost-effective. |
Screening for critical congenital heart disease: a matter of sensitivity
Oster ME , Colarusso T , Glidewell J . Pediatr Cardiol 2013 34 (1) 203-4 It is with great interest that we read the letter by Dummula and Pandey [2] regarding the recent article entitled “False-Negative Pulse Oximetry Screening for Critical Congenital Heart Disease: The Case for Parent Education” [1]. Although much attention has been focused on children with a positive result (i.e., those who fail screening), little is known regarding children with a negative result (i.e., those who pass screening), particularly those with a false-negative result. | However, we wish to comment on a potential misconception regarding screening. In their letter, Dummula and Pandey urge the American Academy of Pediatrics “to mandate that nurseries document the cardiac conditions specifically ruled out by virtue of a negative screen on every discharge summary.” They suggest that pulse oximetry screening for critical congenital heart disease (CCHD) should be used to rule out the possibility of a child having certain types of CCHD due to the high specificity of the test. | Indeed, the specificity of pulse oximetry screening for CCHD is high at 99.9 % [95 % confidence interval (CI) 99.7–99.9 %]. However, the sensitivity, which is the more relevant measure for ruling out disease, is only 76.5 % (95 % CI 67.7–83.5 %) [4]. With this level of sensitivity, some cases of CCHD in newborns will still be missed before they are discharged from the nursery. That is, there will be one child with CCHD with a false-negative result for approximately every three children with a true-positive result. This low sensitivity is most likely due to the fact that the onset and degree of hypoxemia may vary depending on the lesion and the individual [3]. |
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