Kimberlea W. Hauser

Maternal nativity as a risk factor for gastroschisis: A population‐based study

BACKGROUND The prevalence of gastroschisis is increasing in many parts of the world, although the etiology is largely unexplained. Young maternal age has been the only consistently identified, strong risk factor. The objective of this study was to examine the role of maternal nativity in relation to other suspected risk factors for gastroschisis in Florida. METHODS We conducted a retrospective cohort study of singleton infants born in Florida from 1998-2003. Gastroschisis cases were identified from the Florida Birth Defects Registry. Demographic and perinatal data were obtained from birth records. Multivariable Poisson regression was used to estimate adjusted prevalence ratios (PRs) and 95% confidence intervals (CIs) for each factor of interest. RESULTS The 6-year birth prevalence of gastroschisis was 3.26 per 10,000 live births, and the annual rate increased 41% during the study period. In addition to maternal age and marital status, maternal race/ethnicity and nativity were significantly associated with the risk of delivering an infant with gastroschisis. Compared with non-Hispanic white women, non-Hispanic black women had the lowest risk of delivering an infant with gastroschisis (PR, 0.19; 95% CI, 0.13-0.26), followed by Hispanic women (PR, 0.60; 95% CI, 0.43-0.83). Women born outside the United States were significantly less likely than U.S.-born women to deliver an infant with gastroschisis (PR, 0.59; 95% CI, 0.41-0.86). CONCLUSIONS Although young maternal age remains a strong significant risk factor for gastroschisis in Florida, other factors such as maternal race/ethnicity and nativity could be important in explaining the increasing prevalence of gastroschisis.

Promoting pre-conceptional use of folic acid to Hispanic women: a social marketing approach.

Objective: To develop a culturally appropriate communication initiative in an effort to promote the use of pre-conceptional folic acid among Hispanic women of childbearing age. The materials were designed to communicate information about the risks of neural tube defects and the value of folic acid supplementation before conception. Methods: The initiative was developed using a social marketing approach. A series of focus groups were conducted with Hispanic women, particularly Mexican and Mexican-American women, to gain an understanding of their knowledge, attitudes, and behaviors regarding birth defects and folic acid. Additionally focus groups assessed womens preferences for existing folic acid education materials. Qualitative analysis of coded transcripts revealed key themes which were incorporated into a multi-media initiative. Results: Critical themes of the research highlighted the need to include the role of partners and a sense of family in the promotions aimed at these groups. Another key component was the need to dispel myths which act as barriers to pre-conceptional folic acid use. Other important elements included in the media products were the need for Spanish and English versions, an explanation of neural tube defects, and a reference to the cost of the supplements. Conclusion: The final products of the initiative included Spanish and English versions of a brochure, photo-novella, and radio public service announcement. Pre-testing results showed women understood the message, thought the message was for women like them, and expected to begin taking a folic acid supplement. Results of the overall evaluation of the initiative are on-going.

Evaluation of Educational Materials from a Social Marketing Campaign to Promote Folic Acid Use Among Hispanic Women: Insight from Cuban and Puerto Rican Ethnic Subgroups

Current data indicate significant disparities in awareness and use of folic acid between Hispanic and non-Hispanic women. Hispanic women are less likely to have heard about folic acid, to know that folic acid can prevent birth defects, to take folic acid daily, and to take folic acid before pregnancy. “Three Sisters/Las Tres Hermanos” is a folic acid social marketing campaign designed for Mexican-American women. To determine the effectiveness of the materials on other Hispanic sub groups, women of childbearing age from Cuba and Puerto Rico were recruited to evaluate the materials. Participants were asked five pre-test questions about folic acid knowledge and were then provided with the folic acid educational materials that included either a photo-novella and a low literacy brochure, or a video-novella in English or Spanish. Once the participants reviewed the materials, they were asked 10 post-test questions about the materials. The results of the evaluation are discussed.

Florida health care providers' knowledge of folic acid for the prevention of neural tube defects

Objectives: The purpose of this study was to determine the impact of an educational program on the knowledge and practice behavior of health care providers regarding folic acid use for the prevention of neural tube defects. Methods: A survey was mailed to selected Florida health care providers to determine baseline knowledge and practice behavior. After a statewide educational program, another mail survey was sent to the same groups of providers to determine the effect of the campaign. Results: Comparison between the two surveys showed a significant increase in knowledge and in the percentage of health care providers who recommended the periconceptional use of folic acid for the prevention of neural tube defects. Providers graduating in 1992 or later were more likely than those graduating before 1992 to have the appropriate knowledge about folic acid use but were less likely to recommend it to their patients. Conclusions: Significant gains were made in increasing knowledge and changing practice behavior among selected Florida health care providers. Regardless of the magnitude of these gains, our data show that some health care providers who have regular contact with women of childbearing age still do not know the recommended doses of folic acid or do not recommend its use. This points toward the need for continued education as well as efforts to modify provider behavior.

Folic acid promotion for Hispanic women in Florida: A vitamin diary study

Objective: To assess the barriers and benefits of taking multivitamins among Hispanic women exposed to a folic acid social marketing campaign in Florida, USA. Design and setting: Evaluation of non-pregnant women aged 18—35 from multiple Hispanic subgroups. Method: For 6 months, participants exposed to social marketing campaign educational materials were given a supply of vitamins and reported, on a daily basis, how often they took a multivitamin with folic acid and reasons why they may not have taken the multivitamin. Results: Forty-one women participated in the study and 65 per cent missed 10 days or less of taking the supplement. The most common reason for not taking the vitamin was forgetting. Conclusion: Compliance with multivitamin intake has numerous barriers.Therefore, continued educational efforts by public health practitioners are necessary in order to reach Hispanic/Latino populations known to have a high risk of neural tube defects.

Is the Prevalence of Specific Types of Congenital Heart Defects Different for Non-Hispanic White, Non-Hispanic Black and Hispanic Infants?

Background Our purpose was to determine the prevalence of specific types of CHD among non-Hispanic (NH)-Black, NH-White, and Hispanic infants. Methods We conducted a retrospective cohort study with 9,352 singleton infants diagnosed with conotruncal, right or left obstructive or septal CHDs from the Florida Birth Defects Registry, born 1998–2003 to resident NH-White, NH-Black, and Hispanic women aged 15–49. Defect-specific prevalence rates, prevalence ratios and P-values were calculated for each type of CHD and by number of defects for each racial/ethnic group. Results Compared to NH-Whites, NH-Blacks had higher rates of pulmonary valve atresia/stenosis but lower frequency of aortic valve atresia/stenosis and ventricular septal defect. Hispanics had lower rates of aortic valve atresia/stenosis and atrioventricular septal defects than NH-Whites. Conclusions Although few racial/ethnic differences in prevalence are present among infants with major CHD, observed differences are clinically meaningful. However, the underlying etiologies for the observed differences remain unknown.

Birth defects surveillance in Florida: infant death certificates as a case ascertainment source.

BACKGROUND Completeness of case ascertainment is a concern for all birth defects registries and generally requires a multisource approach. Using infant death certificates as one case ascertainment source may identify cases of birth defects that would have otherwise been missed. We sought to examine the utility of adding infant death certificates to the Florida Birth Defect Registrys (FBDR) case ascertainment methods and to determine what factors are associated with the registrys failure to capture infants that die from birth defects. METHODS FBDR cases from 1999 to 2006 were matched to a statewide linked birth-infant death file. Descriptive statistics were used to assess the FBDRs ability to capture infants with a birth defect-related cause of death (COD) and identify conditions most commonly missed. Factors associated with the FBDRs failure to capture an infant who died from a birth defect during the first year of life were identified with logistic regression models. RESULTS There were 2558 (21.1%) infant deaths with birth defects listed as the underlying or an associated COD, of which the FBDR captured 73.3%. Most often missed defects included malformation of the coronary vessels, lung hypoplasia/dysplasia, anencephaly, and unspecified congenital malformations. Logistic regression identified gestational age/birth weight, age at death, autopsy decision, plurality, adequacy of prenatal care, and maternal nativity as factors associated with the FBDRs failure to capture an infant with a birth defect-related COD. CONCLUSIONS Although the overall potential contribution of infant death certificates to the FBDR is small, this source contributes to the prevalence of specific defects.

Status of population-based birth defects surveillance programs before and after the Zika public health response in the United States

BACKGROUND The 2016 Zika public health response in the United States highlighted the need for birth defect surveillance (BDS) programs to collect population-based data on birth defects potentially related to Zika as rapidly as possible through enhanced case ascertainment and reporting. The National Birth Defects Prevention Network (NBDPN) assessed BDS program activities in the United States before and after the Zika response. METHODS The NBDPN surveyed 54 BDS programs regarding activities before and after the Zika response, lessons learned, and programmatic needs. Follow-up emails were sent and phone calls were held for programs with incomplete or no response to the online survey. Survey data were cleaned and tallied, and responses to open-ended questions were placed into best-fit categories. RESULTS A 100% response rate was achieved. Of the 54 programs surveyed, 42 reported participation in the Zika public health response that included BDS activities. Programs faced challenges in expanding their surveillance effort given the response requirements but reported mitigating factors such as establishing and enhancing partnerships and program experience with surveillance and clinical activities. Beyond funding, reported program needs included training, surveillance tools/resources, and availability of clinical experts. CONCLUSIONS Existing BDS programs with experience implementing active case-finding and case verification were able to adapt their surveillance efforts rapidly to collect and report data necessary for the Zika response. Program sustainability for BDS remains challenging; thus, continued support, training, and resource development are important to ensure that the infrastructure built during the Zika response is available for the next public health response.