Jennifer Marshall

Prevalence and correlates of gastroschisis in 15 states, 1995 to 2005.

OBJECTIVE: To identify trends in the prevalence and epidemiologic correlates of gastroschisis using a large population-based sample with cases identified by the National Birth Defects Prevention Network over the course of an 11-year period. METHODS: This study examined 4,713 cases of gastroschisis occurring in 15 states during 1995–2005, using public use natality data sets for denominators. Multivariable Poisson regression was used to identify statistically significant risk factors, and Joinpoint regression analyses were conducted to assess temporal trends in gastroschisis prevalence by maternal age and race and ethnicity. RESULTS: Results show an increasing temporal trend for gastroschisis (from 2.32 per 10,000 to 4.42 per 10,000 live births). Increasing prevalence of gastroschisis has occurred primarily among younger mothers (11.45 per 10,000 live births among mothers younger than age 20 years compared with 5.35 per 10,000 among women aged 20 to 24 years). In the multivariable analysis, using non-Hispanic whites as the referent group, non-Hispanic black women had the lowest risk of having a gastroschisis-affected pregnancy (prevalence ratio 0.42, 95% confidence interval [CI] 0.37–0.48), followed by Hispanics (prevalence ratio 0.86, 95% CI 0.81–0.92). Gastroschisis prevalence did not differ by newborn sex. CONCLUSIONS: Our findings demonstrate that the prevalence of gastroschisis has been increasing since 1995 among 15 states in the United States, and that higher rates of gastroschisis are associated with non-Hispanic white maternal race and ethnicity, and maternal age younger than 25 years (particularly younger than 20 years of age). LEVEL OF EVIDENCE: III

Prevalence, Correlates, and Outcomes of Omphalocele in the United States, 1995-2005.

OBJECTIVE: To examine the trends in the prevalence, epidemiologic correlates, and 1-year survival of omphalocele using 1995–2005 data from the National Birth Defects Prevention Network in the United States. METHODS: We examined 2,308 cases of omphalocele over 11 years from 12 state population-based birth defects registries. We used Poisson regression to estimate prevalence and risk factors for omphalocele and Kaplan-Meier survival curves and Cox proportional hazards regression to estimate survival patterns and hazard ratios, respectively, to examine isolated compared with nonisolated cases. RESULTS: Birth prevalence of omphalocele was 1.92 per 10,000 live births with no consistent trend over time. Neonates with omphalocele were more likely to be male (prevalence ratio 1.22, 95% confidence interval [CI] 1.12–1.34), born to mothers 35 years of age or older (prevalence ratio 1.77, 95% CI 1.54–2.04) and younger than 20 years (prevalence ratio 1.34, 95% CI 1.14–1.56), and of multiple births (prevalence ratio 2.22, 95% CI 1.85–2.66). The highest proportion of neonates with omphalocele had congenital heart defects (32%). The infant mortality rate was 28.7%, with 75% of those occurring in the first 28 days. The best survival was for isolated cases and the worst for neonates with chromosomal defects (hazard ratio 7.75, 95% CI 5.40–11.10) and low-birth-weight neonates (hazard ratio 7.51, 95% CI 5.86–9.63). CONCLUSION: Prevalence of omphalocele has remained constant from 1995 to 2005. Maternal age (younger than 20 years and 35 years or older), multiple gestation, and male sex are important correlates of omphalocele, whereas co-occurrence with chromosomal defects and very low birth weight are consistent determinants of 1-year survival among these neonates. LEVEL OF EVIDENCE: II

Services and supports for young children with Down syndrome: parent and provider perspectives.

BACKGROUND As individuals with Down syndrome are living longer and more socially connected lives, early access to supports and services for their parents will ensure an optimal start and improved outcomes. The familys journey begins at the childs diagnosis, and cumulative experiences throughout infancy and childhood set the tone for a lifetime of decisions made by the family regarding services, supports and activities. METHODS This study utilized focus groups and interviews with seven nurses, five therapists, 25 service co-ordinators, and 10 English- and three Spanish-speaking parents to better understand family experiences and perceptions on accessing Down syndrome-related perinatal, infant and childhood services and supports. RESULTS Parents and providers reflected on key early life issues for children with Down syndrome and their families in five areas: prenatal diagnosis; perinatal care; medical and developmental services; care co-ordination and services; and social and community support. CONCLUSIONS Systems of care are not consistently prepared to provide appropriate family-centred services to individuals with Down syndrome and their families. Individuals with disabilities require formal and informal supports from birth to achieve and maintain a high quality of life.

Following Up on Community-Based Developmental Screening: Do Young Children Get the Services They Need?.

Community-based efforts to identify young children with developmental delays have shown promise, yet little is known about what happens after screening. In this study, parents of 57 children between the ages of 3 and 5 years participated in a telephone survey that occurred 6–18 months after participation in a community-based screening program. Survey questions asked about whether parents had linked to recommended services, barriers to linkages, satisfaction with services, and continued unmet service needs. Although 70% of participants reported connecting to recommended services, only 54% reported that the service(s) met their childs needs. Continuing unmet needs included emotional–behavioral services; occupational therapy; child care and therapy for preschoolers; and more private or alternative options, particularly during after school hours and in rural areas. Implications for improving community-based services for children are discussed.

Parent Concern and Enrollment in Intervention Services for Young Children With Developmental Delays: 2007 National Survey of Children’s Health

This study sought to address underenrollment and late entry to early intervention by identifying factors associated with parental concern and services for developmental delays. The authors analyzed responses from 27,566 parents of children from birth to age 5 from the 2007 National Survey of Children’s Health to quantify and to identify factors associated with developmental concerns and enrollment in public intervention or therapy. Developmental concerns were common among parents from all backgrounds, increasing as children approach preschool age and particularly among children with poor health and those with non-English home language. However, enrollment in intervention is low. Nearly 40% of parents reported one or more concerns, yet 5% of children were enrolled in public intervention or therapy. Multirace or Black race, non-English home language, low income, and private or no insurance were associated with lower odds of services enrollment. Primary health care provider and parent involvement were associated with higher likelihood of parent-reported concern and services.

Evaluation of the Sensitivity and Accuracy of Birth Defects Indicators on the 2003 Revision of the U.S. Birth Certificate: has Data Quality Improved?

BACKGROUND The 2003 revision of the U.S. Birth Certificate was restricted to birth defects readily identifiable at birth. Despite being the lone source of birth defects cases in some studies, we lack population-based information on the quality of birth defects data from the most recent revision of the birth certificate. METHODS We linked birth certificate data to confirmed cases from the Florida Birth Defects Registry (FBDR) to assess the sensitivity and positive predictive value (PPV) of birth defects indicators on the birth certificate. Descriptive statistics and log-binomial regression were used to examine variation in data quality measures by defect type and other characteristics. We also evaluated the contribution of birth certificates as a case ascertainment source for the FBDR. RESULTS Sensitivity of the birth certificate was poor (19.1%) with variation across defects ranging from 55% for anencephaly and 54% for gastroschisis, to <10% for other defects. PPV was better (87.1%) and ranged from >93% for orofacial clefts and gastroschisis to <55% for anencephaly and limb reduction defects. We also observed variation in data quality across maternal, infant, and hospital characteristics. Of cases identified by the birth certificate and not any other FBDR data source, 54.9% were false-positive diagnoses. CONCLUSIONS Efforts to restrict the 2003 revision of the birth certificate to defects identifiable at birth have not improved the likelihood that birth certificates will identify infants born with those defects. We do not recommend the use of birth certificates as a source of birth defects data without case verification strategies.

Immigrant Health through the Lens of Home Visitors, Supervisors, and Administrators: The Florida Maternal, Infant, and Early Childhood Home Visiting Program

OBJECTIVE The Florida Maternal, Infant, and Early Childhood Home Visiting (MIECHV) program aims to minimize the occurrence of adverse maternal and child health outcomes for mothers deemed at-risk during pregnancy or shortly after childbirth. This study sought to understand the needs of and challenges faced by immigrant families in accessing health care through the perspective of Florida MIECHV home visitors, supervisors, and administrators. DESIGN AND SAMPLE In this exploratory qualitative study, focus groups were held at each of the Florida MIECHV-funded program sites with a total of 81 MIECHV staff to discuss how the program addresses a range of participant needs. MEASURES Data were collected through 32 semi-structured focus groups. Transcripts were analyzed using a hybrid approach entailing the development of an a priori codebook and thematic analysis. RESULTS Staff from eight of the 11 programs described social and physical isolation and economic hardship faced by immigrant families enrolled in their programs, resulting in barriers to needed health care and social services. CONCLUSIONS Home visitors in the Florida MIECHV program served as trusted confidants that helped families navigate social services. Future research should focus on the impact that home visiting has on immigrant health and whether this impact is maintained over time.

Elucidating linkages between women’s empowerment in livestock and nutrition: a qualitative study

ABSTRACT This article investigates knowledge and perceptions of women’s empowerment from the perspective of female livestock keepers and elucidates linkages between women’s empowerment and household nutrition in relation to livestock. Eight focus groups with 62 female livestock keepers were conducted in Tanzania. Women’s empowerment in livestock was associated with improved household nutrition. Other opportunities for empowerment were identified that could contribute to women’s decision-making power. The article recommends that all development interventions in the livestock sector be gender sensitive and engage local men in conversations about gender inequities. It also discusses other pathways to increase women’s empowerment and household nutrition.

How Does the Narrowing of Eligibility Criteria Affect Enrollment in Part C Early Intervention

In recent years, many states have narrowed their eligibility criteria for participation in the IDEA Part C early intervention (EI) program for infants and toddlers with or at risk for developmental delays. However, there is scant research on the effects of such a policy change on the population of children served or on the timing of childrens access to EI services. Using data from an EI program serving a diverse, urban population in a large southeastern state, we compared characteristics of children who enrolled in EI the year before (n = 432) and the year after (n = 399), the state adopted more restrictive eligibility criteria for its EI program. Results indicated that following the policy change, children served in the program represented a smaller percentage of the resident birth-to-3 population; a smaller proportion of children enrolling in EI had mild delays; and children were 1.5 months older, on average, when they enrolled in services. The findings not only provide evidence that the narrowing of eligibility criteria achieved the intended effect of reducing EI enrollment but also raise concerns that the new policy may delay access to needed services for children with emergent developmental delays.

Correction to: Work-Related Stressors Among Maternal, Infant, and Early Childhood Home Visiting (MIECHV) Home Visitors: A Qualitative Study

The article “Work-Related Stressors Among Maternal, Infant, and Early Childhood Home Visiting (MIECHV) Home Visitors: A Qualitative Study”, written by Paige J. Alitz, Shana Geary, Pamela C. Birriel, Takudzwa Sayi, Rema Ramakrishnan, Omotola Balogun, Alison Salloum and Jennifer T. Marshall, was originally published electronically on the publisher’s internet portal (currently SpringerLink) on 31 May 2018 without open access. With the author(s)’ decision to opt for Open Choice the copyright of the article changed on 25 July 2018 to