RESUMO
OBJECTIVE: To evaluate trends in survival among children with spina bifida by race/ethnicity and possible prognostic factors in 10 regions of the United States. STUDY DESIGN: A retrospective cohort study was conducted of 5165 infants with spina bifida born during 1979-2003, identified by 10 birth defects registries in the United States. Survival probabilities and adjusted hazard ratios were estimated for race/ethnicity and other characteristics using the Cox proportional hazard model. RESULTS: During the study period, the 1-year survival probability among infants with spina bifida showed improvements for whites (from 88% to 96%), blacks (from 79% to 88%), and Hispanics (from 88% to 93%). The impact of race/ethnicity on survival varied by birth weight, which was the strongest predictor of survival through age 8. There was little racial/ethnic variation in survival among children born of very low birth weight. Among children born of low birth weight, the increased risk of mortality to Hispanics was approximately 4-6 times that of whites. The black-white disparity was greatest among children born of normal birth weight. Congenital heart defects did not affect the risk of mortality among very low birth weight children but increased the risk of mortality 4-fold among children born of normal birth weight. CONCLUSIONS: The survival of infants born with spina bifida has improved; however, improvements in survival varied by race/ethnicity, and blacks and Hispanics continued to have poorer survival than whites in the most recent birth cohort from 1998-2002. Further studies are warranted to elucidate possible reasons for the observed differences in survival.
Assuntos
Disparidades nos Níveis de Saúde , Disrafismo Espinal/mortalidade , Adolescente , Negro ou Afro-Americano , Peso ao Nascer , Criança , Pré-Escolar , Estudos de Coortes , Feminino , Hispânico ou Latino , Humanos , Lactente , Recém-Nascido , Estimativa de Kaplan-Meier , Masculino , Prognóstico , Modelos de Riscos Proporcionais , Sistema de Registros , Estudos Retrospectivos , Fatores de Risco , Disrafismo Espinal/etnologia , Taxa de Sobrevida/tendências , Estados Unidos/epidemiologia , População Branca , Adulto JovemRESUMO
BACKGROUND: Most parents would agree that the admission of an infant to the neonatal intensive care unit (NICU) is stressful. Existing research is focused on white mothers, with little known about the experiences of Spanish-speaking, Mexican American mothers who have an infant in the NICU. PURPOSE: The purpose of this qualitative case study was to describe the experiences of a Spanish-speaking, Mexican American mother whose infant had been in the NICU. METHODS: Qualitative description was used to conduct this study. One Spanish-speaking, Mexican American mother who had an infant in the NICU was recruited through purposive sampling. An in-depth interview was conducted, audio-recorded, and transcribed verbatim. Conventional content analysis was used to analyze the data. FINDINGS: Analysis of the data revealed that the experience of a Spanish-speaking, Mexican American mother who had an infant in the NICU was one of uncertainty, involvement, trust, and anticipating discrimination.
Assuntos
Atitude Frente a Saúde/etnologia , Terapia Intensiva Neonatal/psicologia , Americanos Mexicanos/etnologia , Mães/psicologia , Adaptação Psicológica , Adulto , Atitude do Pessoal de Saúde/etnologia , Barreiras de Comunicação , Feminino , Humanos , Lactente , Recém-Nascido , Americanos Mexicanos/educação , Mães/educação , Enfermagem Neonatal , Papel do Profissional de Enfermagem/psicologia , Pesquisa Metodológica em Enfermagem , Recursos Humanos de Enfermagem Hospitalar/psicologia , Preconceito , Relações Profissional-Família , Pesquisa Qualitativa , Disrafismo Espinal/etnologia , Disrafismo Espinal/enfermagem , Inquéritos e Questionários , Texas , Confiança , IncertezaRESUMO
BACKGROUND: Literature on the risk of birth defects among foreign- versus U.S.-born Hispanics is limited or inconsistent. We examined the association between country of birth, immigration patterns, and birth defects among Hispanic mothers. METHODS: We used data from the National Birth Defects Prevention Study and calculated odds ratios (ORs) and 95% confidence intervals and assessed the relationship between mothers' country of birth, years lived in the United States, and birth defects among 575 foreign-born compared to 539 U.S.-born Hispanic mothers. RESULTS: Hispanic mothers born in Mexico/Central America were more likely to deliver babies with spina bifida (OR = 1.53) than their U.S.-born counterparts. Also, mothers born in Mexico/Central America or who were recent United States immigrants (< or =5 years) were less likely to deliver babies with all atrial septal defects combined, all septal defects combined, or atrial septal defect, secundum type. However, Hispanic foreign-born mothers who lived in the United States for >5 years were more likely to deliver babies with all neural tube defects combined (OR = 1.42), spina bifida (OR = 1.89), and longitudinal limb defects (OR = 2.34). Foreign-born mothers, regardless of their number of years lived in the United States, were more likely to deliver babies with anotia or microtia. CONCLUSIONS: Depending on the type of birth defect, foreign-born Hispanic mothers might be at higher or lower risk of delivering babies with the defects. The differences might reflect variations in predisposition, cultural norms, behavioral characteristics, and/or ascertainment of the birth defects.
Assuntos
Anormalidades Congênitas/etnologia , Emigração e Imigração , Hispânico ou Latino , Exposição Materna/efeitos adversos , Características de Residência , Adulto , América Central/etnologia , Feminino , Comunicação Interatrial/etnologia , Humanos , México/etnologia , Disrafismo Espinal/etnologia , Estados Unidos/epidemiologia , Adulto JovemRESUMO
OBJECTIVE: In an effort to reduce the occurrence of neural tube defects (NTDs), folic acid fortification of US enriched grain products was authorized by the Food and Drug Administration in March 1996 and required by January 1998. Fortification has been shown to result in an important decline in the prevalence of spina bifida and anencephaly in the general US population; however, fortification's impact on specific racial/ethnic groups has not been well described. We sought to characterize the decline in the prevalence of spina bifida and anencephaly among specific racial/ethnic groups during the transition to mandatory folic acid fortification in the United States. METHODS: Data from 21 population-based birth defects surveillance systems were used to examine trends in prevalence of spina bifida and anencephaly for specific racial/ethnic groups for the years 1995-2002. These years were divided into 3 periods: prefortification, optional fortification, and mandatory fortification. Race/ethnicity was defined as Hispanic, non-Hispanic white, and non-Hispanic black. Prevalence ratios were calculated for each racial/ethnic group by dividing the prevalence from the mandatory fortification period by the prevalence in the prefortification period. RESULTS: The study included data on 4468 cases of spina bifida and 2625 cases of anencephaly. The prevalence of spina bifida and anencephaly was highest among Hispanic births, followed by non-Hispanic white births, with the lowest prevalence among non-Hispanic black births. Significant declines in spina bifida and anencephaly were observed among Hispanic births and non-Hispanic white births. The prevalence ratio for non-Hispanic black births was of borderline significance for spina bifida and was not significant for anencephaly. CONCLUSIONS: The results of this study suggest that folic acid fortification is associated with significant decreases in the prevalence of spina bifida and anencephaly among non-Hispanic white and Hispanic births. The magnitude of the reduction was similar between these 2 groups and was more pronounced for spina bifida than for anencephaly. The decline in the prevalence of spina bifida and anencephaly among non-Hispanic black births did not reach statistical significance. Efforts to increase folic acid consumption for the prevention of NTDs in pregnancies among women of all races/ethnicities should be continued, and studies to identify and elucidate other risk factors for NTDs are warranted.
Assuntos
Anencefalia/etnologia , Etnicidade/estatística & dados numéricos , Grupos Raciais/estatística & dados numéricos , Disrafismo Espinal/etnologia , Anencefalia/epidemiologia , População Negra/estatística & dados numéricos , Feminino , Ácido Fólico/administração & dosagem , Alimentos Fortificados , Hispânico ou Latino/estatística & dados numéricos , Humanos , Gravidez , Cuidado Pré-Natal , Prevalência , Porto Rico/epidemiologia , Disrafismo Espinal/epidemiologia , Estados Unidos/epidemiologia , População Branca/estatística & dados numéricosRESUMO
Isolated neural tube defects (NTDs) appear to have different risk factors compared to nonisolated NTDs. To extend those observations, we explored routinely collected child and parental characteristics as possible risk factors among isolated versus nonisolated NTD cases, among high versus low spina bifida cases, and among open versus skin-covered spina bifida case. Fetuses and liveborn infants with anencephaly or spina bifida among the 1983-87 cohort of births and fetal deaths (n = 712,863) were ascertained by the California Birth Defects Monitoring Program. One hundred and ninety-three anencephalic cases and 272 spina bifida cases were compared to a random sample of 5,000 liveborn infants. Among anencephalic cases, 55% were livebirths and 85% were isolated. The proportion of males was similar to females across all subgroups. Increased risks were found for Hispanic whites, with risk estimates highest for nonisolated cases (odds ratio = 4.0, 95% confidence interval [1.5, 10.5]). Among spina bifida cases, 92% were livebirths, 81% isolated, 82% open, and 86% were low. More males were found among the group with isolated high open defects, and fewer males were found among the group of all closed defects. The proportion of males was similar to females in all other subgroups. Cases were more likely to be Hispanic with risks largest for high open defects (odds ratio = 2.9, [1.2,6.6]), particularly for nonisolated cases. This study provides some evidence that further classifications of NTDs may reveal subgroupings of cases with different etiologies.