Systematic estimates of the global, regional and national under-5 mortality burden attributable to birth defects in 2000-2019: a summary of findings from the 2020 WHO estimates.

OBJECTIVES: To examine the potential for bias in the estimate of under-5 mortality due to birth defects recently produced by the WHO and the Maternal and Child Epidemiology Estimation research group. DESIGN: Systematic analysis. METHODS: We examined the estimated number of under-5 deaths due to birth defects, the birth defect specific under-5 mortality rate, and the per cent of under-5 mortality due to birth defects, by geographic region, national income and under-5 mortality rate for three age groups from 2000 to 2019. RESULTS: The under-5 deaths per 1000 live births from birth defects fell from 3.4 (95% uncertainty interval (UI) 3.1-3.8) in 2000 to 2.9 (UI 2.6-3.3) in 2019. The per cent of all under-5 mortality attributable to birth defects increased from 4.6% (UI 4.1%-5.1%) in 2000 to 7.6% (UI 6.9%-8.6%) in 2019. There is significant variability in mortality due to birth defects by national income level. In 2019, the under-5 mortality rate due to birth defects was less in high-income countries than in low-income and middle-income countries, 1.3 (UI 1.2-1.3) and 3.0 (UI 2.8-3.4) per 1000 live births, respectively. These mortality rates correspond to 27.7% (UI 26.6%-28.8%) of all under-5 mortality in high-income countries being due to birth defects, and 7.4% (UI 6.7%-8.2%) in low-income and middle-income countries. CONCLUSIONS: While the under-5 mortality due to birth defects is declining, the per cent of under-5 mortality attributable to birth defects has increased, with significant variability across regions globally. The estimates in low-income and middle-income countries are likely underestimated due to the nature of the WHO estimates, which are based in part on verbal autopsy studies and should be taken as a minimum estimate. Given these limitations, comprehensive and systematic estimates of the mortality burden due to birth defects are needed to estimate the actual burden.

Social and financial barriers may contribute to a "hidden mortality" in Uganda for children with congenital anomalies.

BACKGROUND: The true incidence of congenital anomalies in sub-Saharan Africa is unknown. Owing to complex challenges associated with congenital anomalies, many affected babies may never present to a health facility, resulting in an underestimation of disease burden. METHODS: Interviews were conducted with Ugandans between September 2018 and May 2019. Responses from community members versus families of children with congenital anomalies were compared. RESULTS: A total of 198 Ugandans were interviewed (91 family members, 80 community members). All participants (N = 198) believed that seeking surgical care would lead to poverty, 43% (n = 84) assumed fathers would abandon the child, and 26% (n = 45) thought a child with a congenital anomaly in their community had been left to die. Causes of anomalies were believed to be contraceptive methods (48%, n = 95), witchcraft (17%, n = 34), or drugs (10%, n = 19). Of family members, 25 (28%) were advised to allow the child to die. Families with affected children were more likely to have a lower income (P < .001), believe anomalies could be treated (P = .007), but thought that allowing the child to die was best for the family (32% vs 9%; P < .0001). Monthly household income <50,000 Uganda shillings ($13 United States dollars) was a significant predictor of the father leaving the family (P = .024), being advised to not pursue medical care (P = .046), and believing that God should decide the child's fate (P = .047). CONCLUSION: Families face significant financial and social pressures when deciding to seek surgical care for a child with a congenital anomaly. Many children with anomalies may die and never reach a health facility to be counted, thus contributing to a hidden mortality.

Infant Mortality Attributable to Birth Defects - United States, 2003-2017.

Birth defects are a leading cause of infant mortality in the United States, accounting for 20.6% of infant deaths in 2017 (1). Rates of infant mortality attributable to birth defects (IMBD) have generally declined since the 1970s (1-3). U.S. linked birth/infant death data from 2003-2017 were used to assess trends in IMBD. Overall, rates declined 10% during 2003-2017, but decreases varied by maternal and infant characteristics. During 2003-2017, IMBD rates decreased 4% for infants of Hispanic mothers, 11% for infants of non-Hispanic black (black) mothers, and 12% for infants of non-Hispanic white (white) mothers. In 2017, these rates were highest among infants of black mothers (13.3 per 10,000 live births) and were lowest among infants of white mothers (9.9). During 2003-2017, IMBD rates for infants who were born extremely preterm (20-27 completed gestational weeks), full term (39-40 weeks), and late term/postterm (41-44 weeks) declined 20%-29%; rates for moderate (32-33 weeks) and late preterm (34-36 weeks) infants increased 17%. Continued tracking of IMBD rates can help identify areas where efforts to reduce IMBD are needed, such as among infants born to black and Hispanic mothers and those born moderate and late preterm (32-36 weeks).

Ethnic and socioeconomic variation in cause-specific preterm infant mortality by gestational age at birth: national cohort study.

OBJECTIVE: To describe ethnic and socioeconomic variation in cause-specific infant mortality of preterm babies by gestational age at birth. DESIGN: National birth cohort study. SETTING: England and Wales 2006-2012. SUBJECTS: Singleton live births at 24-36 completed weeks' gestation (n=256 142). OUTCOME MEASURES: Adjusted rate ratios for death in infancy by cause (three groups), within categories of gestational age at birth (24-27, 28-31, 32-36 weeks), by baby's ethnicity (nine groups) or area deprivation score (Index of Multiple Deprivation quintiles). RESULTS: Among 24-27 week births (5% of subjects; 47% of those who died in infancy), all minority ethnic groups had lower risk of immaturity-related death than White British, the lowest rate ratios being 0.63 (95% CI 0.49 to 0.80) for Black Caribbean, 0.74 (0.64 to 0.85) for Black African and 0.75 (0.60 to 0.94) for Indian. Among 32-36 week births, all minority groups had higher risk of death from congenital anomalies than White British, the highest rate ratios being 4.50 (3.78 to 5.37) for Pakistani, 2.89 (2.10 to 3.97) for Bangladeshi and 2.06 (1.59 to 2.68) for Black African; risks of death from congenital anomalies and combined rarer causes (infection, intrapartum conditions, SIDS and unclassified) increased with deprivation, the rate ratios comparing the most with the least deprived quintile being, respectively, 1.54 (1.22 to 1.93) and 2.05 (1.55 to 2.72). There was no evidence of socioeconomic variation in deaths from immaturity-related conditions. CONCLUSIONS: Gestation-specific preterm infant mortality shows contrasting ethnic patterns of death from immaturity-related conditions in extremely-preterm babies, and congenital anomalies in moderate/late-preterm babies. Socioeconomic variation derives from congenital anomalies and rarer causes in moderate/late-preterm babies. Future research should examine biological origins of extremely preterm birth.

A detailed assessment of high infant death rates in Gaziantep in 2013.

OBJECTIVE: To determine the causes of a relatively high infant mortality rate in a Turkish city compared to the nationwide rate. METHODS: The cross-sectional study was conducted at Gaziantep from January to March 2014, and comprised a representative sample of infant deaths that occurred between January and December 2013 in the city of Gaziantep, Turkey. Mothers of the deceased infants were interviewed using a structured questionnaire. Data was analysed using SPSS 22. RESULTS: Of the 556 deaths, 114(20.5%) cases comprised the sample and their mothers formed the study universe. Of them, 3(2.6%) were aged below 18 years; 22(19.3%) were over 35 years; 20(17.5%) had 4 or more children, and 40(35.0%) had an interval of less than 2 years between two pregnancies. Consanguineous marriage was the case with 49(43.0%) mothers. Overall, 111(97.4%) mothers had received prenatal care. Of the births, 66(57.9%) had occurred in private hospitals and 41(36%) in state hospitals. A total of 77(67.5%) infants had been delivered by caesarean section. The most frequent causes of mortality were congenital abnormalities 33(28.9%), prematurity 29(25.4%), respiratory distress syndrome 24(21.1%) and congenital heart diseases 14(12.3%). CONCLUSIONS: A high rate of consanguineous marriages seemed to be one of the most important causes of the high infant death rate in Gaziantep compared to the rest of Turkey..

Age-Specific Distribution of Diagnosis and Outcomes of Children Admitted to ICUs: A Population-Based Cohort Study.

OBJECTIVES: Although several studies have reported outcome data on critically ill children, detailed reports by age are not available. We aimed to evaluate the age-specific estimates of trends in causes of diagnosis, procedures, and outcomes of pediatric admissions to ICUs in a national representative sample. DESIGN: A population-based retrospective cohort study. SETTING: Three hundred forty-four hospitals in South Korea. PATIENTS: All pediatric admissions to ICUs in Korea from August 1, 2009, to September 30, 2014, were covered by the Korean National Health Insurance Corporation, with virtually complete coverage of the pediatric population in Korea. Patients less than 18 years with at least one ICUs admission between August 1, 2009, and September 30, 2014. We excluded neonatal admissions (< 28 days), neonatal ICUs, and admissions for health status other than a disease or injury. The final sample size was 38,684 admissions from 32,443 pediatric patients. INTERVENTION: None. MEASUREMENTS AND MAIN RESULTS: The overall age-standardized admission rate for pediatric patients was 75.9 admissions per 100,000 person-years. The most common primary diagnosis of admissions was congenital malformation (10,897 admissions, 28.2%), with marked differences by age at admission (5,712 admissions [54.8%] in infants, 3,994 admissions [24.6%] in children, and 1,191 admissions [9.9%] in adolescents). Injury was the most common primary diagnosis in adolescents (3,248 admissions, 27.1%). The overall in-hospital mortality was 2,234 (5.8%) with relatively minor variations across age. Neoplasms and circulatory and neurologic diseases had both high frequency of admissions and high in-hospital mortality. CONCLUSIONS: Admission patterns, diagnosis, management, and outcomes of pediatric patients admitted to ICUs varied by age groups. Strategies to improve critical care qualities of pediatric patients need to be based on the differences of age and may need to be targeted at specific age groups.

Assessing the deprivation gap in stillbirths and neonatal deaths by cause of death: a national population-based study.

OBJECTIVE: To investigate socioeconomic inequalities in cause-specific stillbirth and neonatal mortality to identify key areas of focus for future intervention strategies to achieve government ambitions to reduce mortality rates. DESIGN: Retrospective cohort study. SETTING: England, Wales, Scotland and the UK Crown Dependencies. PARTICIPANTS: All singleton births between 1 January 2014 and 31 December 2015 at ≥24 weeks' gestation. MAIN OUTCOME MEASURE: Cause-specific stillbirth or neonatal death (0-27 days after birth) per 10 000 births by deprivation quintile. RESULTS: Data on 5694 stillbirths (38.1 per 10 000 total births) and 2368 neonatal deaths (15.9 per 10 000 live births) were obtained from Mothers and Babies: Reducing Risk through Audits and Confidential Enquiries across the UK (MBRRACE-UK). Women from the most deprived areas were 1.68 (95% CI 1.56 to 1.81) times more likely to experience a stillbirth and 1.67 (95% CI 1.48 to 1.87) times more likely to experience a neonatal death than those from the least deprived areas, equating to an excess of 690 stillbirths and 231 neonatal deaths per year associated with deprivation. Small for gestational age (SGA) unexplained antepartum stillbirth was the greatest contributor to excess stillbirths accounting for 33% of the deprivation gap in stillbirths. Congenital anomalies accounted for the majority (59%) of the deprivation gap in neonatal deaths, followed by preterm birth not SGA (24-27 weeks, 27%). CONCLUSIONS: Cause-specific mortality rates at a national level allow identification of key areas of focus for future intervention strategies to reduce mortality. Despite a reduction in the deprivation gap for stillbirths and neonatal deaths, public health interventions should primarily focus on socioeconomic determinants of SGA stillbirth and congenital anomalies.

Survival and healthcare utilization of infants diagnosed with lethal congenital malformations.

OBJECTIVE: We assessed survival, hospital length of stay (LOS), and costs of medical care for infants with lethal congenital malformations, and also examined the relationship between medical and surgical therapies and survival. STUDY DESIGN: Retrospective cohort study including infants born 1998-2009 with lethal congenital malformations, identified using a longitudinally linked maternal/infant database. RESULTS: The cohort included 786 infants: trisomy 18 (T18, n = 350), trisomy 13 (T13, n = 206), anencephaly (n = 125), bilateral renal agenesis (n = 53), thanatophoric dysplasia/achondrogenesis/lethal osteogenesis imperfecta (n = 38), and infants > 1 of the birth defects (n = 14). Compared to infants without birth defects, infants with T18, T13, bilateral renal agenesis, and skeletal dysplasias had longer survival rates, higher inpatient medical costs, and longer LOS. CONCLUSION: Care practices and survival have changed over time for infants with T18, T13, bilateral renal agenesis, and skeletal dysplasias. This information will be useful for clinicians in counseling families and in shaping goals of care prenatally and postnatally.

Differences Between Rural and Urban Areas in Mortality Rates for the Leading Causes of Infant Death: United States, 2013-2015.

The leading causes of infant death vary by age at death but were consistent from 2005 to 2015 (1-6). Previous research shows higher infant mortality rates in rural counties compared with urban counties and differences in cause of death for individuals aged 1 year and over by urbanization level (4,5,7,8). No research, however, has examined if mortality rates from the leading causes of infant death differ by urbanization level. This report describes the mortality rates for the five leading causes of infant, neonatal, and postneonatal death in the United States across rural, small and medium urban, and large urban counties defined by maternal residence, as reported on the birth certificate for combined years 2013-2015.

Maternal Medicaid Recipient Status and Congenital Malformations among New York State Live Births in 2010.

BACKGROUND: Congenital malformations are a leading cause of infant mortality in the United States, and risk for some congenital malformations varies by socioeconomic status (SES). Medicaid provides health insurance for people with low income, and covers approximately half of all live births in the United States. Income level is one aspect of SES. Studies have shown relationships between SES and some congenital malformations. METHODS: This retrospective cohort study examined associations between maternal Medicaid recipient status and 46 congenital malformations in New York State for birth year 2010. The impact of Medicaid continuous enrollment (CE) status was evaluated in a sub-analysis of Medicaid recipients. Logistic regression was used to calculate adjusted odds ratios and 95% confidence intervals. RESULTS: The study cohort included 240,721 live births, 3778 infants with one or more congenital malformation of interest, and 118,631 maternal Medicaid recipients at the time of the infant's birth. Odds ratios for cleft lip with or without cleft palate and rectal atresia or stenosis were increased for Medicaid recipients compared with non-Medicaid recipients. However, odds ratios for cleft lip with or without cleft palate and rectal atresia or stenosis were decreased for CE compared with non-CE Medicaid recipients. CONCLUSION: Maternal Medicaid recipient status was associated with few of the 46 congenital malformations evaluated. However, some associations found were modified by CE in Medicaid. Birth Defects Research 109:1460-1470, 2017.© 2017 Wiley Periodicals, Inc.

Racial disparity in infant mortality.

In the United States, African-American infants have significantly higher mortality than white infants. Previous work has identified associations between individual socioeconomic factors and select community-level factors. In this review, the authors look beyond traditional risk factors for infant mortality and examine the social context of race in this country, in an effort to understand African-American women's long-standing birth outcome disadvantage. In the process, recent insights are highlighted concerning neighborhood-level factors such as crime, segregation, built environment, and institutional racism, other likely causes for the poor outcomes of African-American infants in this country compared with infants in most other industrialized nations.

Population-based study on infant mortality. / Estudo de base populacional sobre mortalidade infantil.

Although Brazil has reduced social, economic and health indicators disparities in the last decade, intra- and inter-regional differences in child mortality rates (CMR) persist in regions such as the state capital of Mato Grosso. This population-based study aimed to investigate factors associated with child mortality in five cohorts of live births (LB) of mothers living in Cuiabá (MT), Brazil, 2006-2010, through probabilistic linkage in 47,018 LB. We used hierarchical logistic regression analysis. Of the 617 child deaths, 48% occurred in the early neonatal period. CMR ranged from 14.6 to 12.0 deaths per thousand LB. The following remained independently associated with death: mothers without companion (OR = 1.32); low number of prenatal consultations (OR = 1.65); low birthweight (OR = 4.83); prematurity (OR = 3.05); Apgar ≤ 7 at the first minute (OR = 3.19); Apgar ≤ 7 at the fifth minute (OR = 4.95); congenital malformations (OR = 14.91) and male gender (OR = 1.26). CMR has declined in Cuiabá, however, there is need to guide public healthcare policies in the prenatal and perinatal period to reduce early neonatal mortality and further studies to identify the causes of preventable deaths.

Estudo de base populacional sobre mortalidade infantil / Population-based study on infant mortality

Resumo Embora o Brasil tenha diminuído na última década as disparidades sociais, econômicas e de indicadores de saúde, as diferenças intra e inter-regionais das taxas de mortalidade infantil (TMI) persistem em regiões como a capital do estado de Mato Grosso. Estudo de base populacional que objetivou investigar fatores associados à mortalidade infantil em cinco coortes de nascidos vivos (NV) de mães residentes em Cuiabá (MT), Brasil, 2006-2010, através de linkage probabilístico em 47.018NV. Utilizou-se regressão logística, por meio de análise hierarquizada. Dos 617 óbitos infantis, 48% ocorreram no período neonatal precoce. A TMI variou de 14,6 a 12,0 óbitos por mil NV. Permaneceram independentemente associados ao óbito: mães sem companheiro (OR = 1,32); baixo número de consultas de pré-natal (OR = 1,65); baixo peso ao nascer (OR = 4,83); prematuridade (OR = 3,05); Apgar ≤ 7 no 1º minuto (OR = 3,19); Apgar ≤ 7 no 5º minuto (OR = 4,95); malformação congênita (OR = 14,91) e sexo masculino (OR = 1,26). Houve redução da mortalidade infantil em Cuiabá, porém, há necessidade de direcionamento de políticas públicas de saúde de assistência no período pré-natal e perinatal para alcançar a diminuição da mortalidade neonatal precoce e novos estudos para identificar quais as causas de óbitos evitáveis.

Abstract Although Brazil has reduced social, economic and health indicators disparities in the last decade, intra- and inter-regional differences in child mortality rates (CMR) persist in regions such as the state capital of Mato Grosso. This population-based study aimed to investigate factors associated with child mortality in five cohorts of live births (LB) of mothers living in Cuiabá (MT), Brazil, 2006-2010, through probabilistic linkage in 47,018 LB. We used hierarchical logistic regression analysis. Of the 617 child deaths, 48% occurred in the early neonatal period. CMR ranged from 14.6 to 12.0 deaths per thousand LB. The following remained independently associated with death: mothers without companion (OR = 1.32); low number of prenatal consultations (OR = 1.65); low birthweight (OR = 4.83); prematurity (OR = 3.05); Apgar ≤ 7 at the first minute (OR = 3.19); Apgar ≤ 7 at the fifth minute (OR = 4.95); congenital malformations (OR = 14.91) and male gender (OR = 1.26). CMR has declined in Cuiabá, however, there is need to guide public healthcare policies in the prenatal and perinatal period to reduce early neonatal mortality and further studies to identify the causes of preventable deaths.

Early neonatal death: A challenge worldwide.

Early neonatal death (ENND), defined as the death of a newborn between zero and seven days after birth, represents 73% of all postnatal deaths worldwide. Despite a 50% reduction in childhood mortality, reduction of ENND has significantly lagged behind other Millennium Developmental Goal achievements and is a growing contributor to overall mortality in children aged <5 years. The etiology of ENND is closely related to the level of a country's industrialization. Hence, prematurity and congenital anomalies are the leading causes in high-income countries. Furthermore, sudden unexpected early neonatal deaths (SUEND) and collapse have only recently been identified as relevant and often preventable causes of death. Concomitantly, perinatal-related events such as asphyxia and infections are extremely relevant in Africa, South East Asia, and Latin America and, together with prematurity, are the principal contributors to ENND. In high-income countries, according to current research evidence, survival may be improved by applying antenatal and perinatal therapies and immediate newborn resuscitation, as well as by centralizing at-risk deliveries to centers with appropriate expertise available around the clock. In addition, resources should be allocated to the close surveillance of newborn infants, especially during the first hours of life. Many of the conditions leading to ENND in low-income countries are preventable with relatively easy and cost-effective interventions such as contraception, vaccination of pregnant women, hygienic delivery at a hospital, training health care workers in resuscitation practices, simplified algorithms that allow for early detection of perinatal infections, and early initiation of breastfeeding and skin-to-skin care. The future is promising. As initiatives undertaken in previous decades have led to substantial reduction in childhood mortality, it is expected that new initiatives targeting the perinatal/neonatal periods are bound to reduce ENND and provide these babies with a better future.

Association Between Infant Mortality Attributable to Birth Defects and Payment Source for Delivery - United States, 2011-2013.

Birth defects are a leading cause of infant mortality in the United States (1), accounting for approximately 20% of infant deaths. The rate of infant mortality attributable to birth defects (IMBD) in the United States in 2014 was 11.9 per 10,000 live births (1). Rates of IMBD differ by race/ethnicity (2), age group at death (2), and gestational age at birth (3). Insurance type is associated with survival among infants with congenital heart defects (CHD) (4). In 2003, a checkbox indicating principal payment source for delivery was added to the U.S. standard birth certificate (5). To assess IMBD by payment source for delivery, CDC analyzed linked U.S. birth/infant death data for 2011-2013 from states that adopted the 2003 revision of the birth certificate. The results indicated that IMBD rates for preterm (<37 weeks of gestation) and term (≥37 weeks) infants whose deliveries were covered by Medicaid were higher during the neonatal (<28 days) and postneonatal (≥28 days to <1 year) periods compared with infants whose deliveries were covered by private insurance. Similar differences in postneonatal mortality were observed for the three most common categories of birth defects listed as a cause of death: central nervous system (CNS) defects, CHD, and chromosomal abnormalities. Strategies to ensure quality of care and access to care might reduce the difference between deliveries covered by Medicaid and those covered by private insurance.

National and subnational all-cause and cause-specific child mortality in China, 1996-2015: a systematic analysis with implications for the Sustainable Development Goals.

BACKGROUND: China has achieved Millennium Development Goal 4 to reduce under-5 mortality rate by two-thirds between 1990 and 2015. In this study, we estimated the national and subnational levels and causes of child mortality in China annually from 1996 to 2015 to draw implications for achievement of the SDGs for China and other low-income and middle-income countries. METHODS: In this systematic analysis, we adjusted empirical data on levels and causes of child mortality collected in the China Maternal and Child Health Surveillance System to generate representative estimates at the national and subnational levels. In adjusting the data, we considered the sampling design and probability, applied smoothing techniques to produce stable trends, fitted livebirth and age-specific death estimates to natvional estimates produced by the UN for international comparison, and partitioned national estimates of infrequent causes produced by independent sources to the subnational level. FINDINGS: Between 1996 and 2015, the under-5 mortality rate in China declined from 50·8 per 1000 livebirths to 10·7 per 1000 livebirths, at an average annual rate of reduction of 8·2%. However, 181 600 children still died before their fifth birthday, with 93 400 (51·5%) deaths occurring in neonates. Great inequity exists in child mortality across regions and in urban versus rural areas. The leading causes of under-5 mortality in 2015 were congenital abnormalities (35 700 deaths, 95% uncertainty range [UR] 28 400-45 200), preterm birth complications (30 900 deaths, 24 200-40 800), and injuries (26 600 deaths, 21 000-33 400). Pneumonia contributed to a higher proportion of deaths in the western region of China than in the eastern and central regions, and injury was a main cause of death in rural areas. Variations in cause-of-death composition by age were also examined. The contribution of preterm birth complications to mortality decreased after the neonatal period; congenital abnormalities remained an important cause of mortality throughout infancy, whereas the contribution of injuries to mortality increased after the first year of life. INTERPRETATION: China has achieved a rapid reduction in child mortality in 1996-2015. The decline has been widespread across regions, urban and rural areas, age groups, and cause-of-death categories, but great disparities remain. The western region and rural areas and especially western rural areas should receive most attention in improving child survival through enhanced policy and programmes in the Sustainable Development Goals era. Continued investment is crucial in primary and secondary prevention of deaths due to congenital abnormalities, preterm birth complications, and injuries nationally, and of deaths due to pneumonia in western rural areas. The study also has implications for improving child survival and civil registration and vital statistics in other low-income and middle-income countries. FUNDING: Bill & Melinda Gates Foundation.

End-of-Life Care for Hispanic Children: A Study of California Medicaid Beneficiaries.

INTRODUCTION: More than 8,000 Hispanic children die annually in the United States; yet little is known about the end-of-life care utilized. The purpose of this study was to examine the children and family characteristics associated with end-of-life care for Hispanic children. METHOD: A sample of 370 Hispanic children was created, using the 2009-2010 California Medicaid data. The relationship between child and family characteristics and end-of-life care utilization (i.e., hospice enrollment, emergency room utilization, hospital admissions) was analyzed using multivariate regression. RESULTS: Pediatric hospice accessibility (p < .05), palliative care policy (p < .01), congenital anomalies (p < .01), and cardiovascular conditions (p < .01) were related to hospice enrollment. Usual source of care (p < .001), functional status (p < .001), palliative care policy (p < .01), and private insurance (p < .01) were associated with emergency room utilization, while usual source of care (p < .001), cancer (p < .001), and disability status (p < .01) corresponded with hospital admissions. CONCLUSION: Nursing practices aimed at engaging Hispanic families in their community are critical to end-of-life care utilization for Hispanic children.

Socioeconomic inequalities in pregnancy outcome associated with Down syndrome: a population-based study.

OBJECTIVE: To investigate socioeconomic inequalities in outcome of pregnancy associated with Down syndrome (DS) compared with other congenital anomalies screened for during pregnancy. DESIGN AND SETTING: Retrospective population-based registry study (East Midlands & South Yorkshire in England). PARTICIPANTS: All registered cases of DS and nine selected congenital anomalies with poor prognostic outcome (the UK Fetal Anomaly Screening Programme (FASP)9) with an end of pregnancy date between 1 January 1998 and 31 December 2007. MAIN OUTCOME MEASURES: Poisson regression models were used to explore outcome measures, including socioeconomic variation in rates of anomaly; antenatal detection; pregnancy outcome; live birth incidence and neonatal mortality. Deprivation was measured using the Index of Multiple Deprivation 2004 at super output area level. RESULTS: There were 1151 cases of DS and 1572 cases of the nine severe anomalies combined. The overall rate of antenatal detection was 57% for DS, which decreased with increasing deprivation (rate ratio comparing the most deprived tenth with the least deprived: 0.76 (0.60 to 0.97)). Antenatal detection rates were considerably higher for FASP9 anomalies (86%), with no evidence of a trend with deprivation (0.99 95% CI (0.84 to 1.17)). The termination of pregnancy rate following antenatal diagnosis was higher for DS (86%) than the FASP9 anomalies (70%). Both groups showed wide socioeconomic variation in the termination of pregnancy rate (rate ratio: DS: 0.76 (0.58 to 0.99); FASP9 anomalies: 0.80 (0.65 to 0.97)). Consequently, socioeconomic inequalities in live birth and neonatal mortality rates associated with these anomalies arise that were not observed in utero. CONCLUSIONS: Socioeconomic inequalities exist in the antenatal detection of DS, and subsequent termination rates are much higher for DS than other anomalies. Termination rates for all anomalies are lower in more deprived areas leading to wide socioeconomic inequalities in live born infants with a congenital anomaly, particularly DS, and subsequent neonatal mortality.