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At least 19 recordsLinked to original sources

Characteristics of unmatched maternal and baby records in linked birth records and hospital discharge data.

Linkage of routinely collected health data collections is increasingly being used to investigate maternal and infant morbidity and mortality. Such data have the advantage of being population based and readily available. However, in using such data it is important to understand the data linkage process, the proportions of unmatched records and the characteristics of these records so that potential bias can be recognised. This article describes the differences in characteristics of matched and unmatched mothers' and babies' records generated in the linkage of birth records with hospital discharge data and explores some of the reasons for these differences. The study population included over 250,000 women and their babies discharged from hospital following delivery in New South Wales, Australia between 1 January 2000 and 31 December 2002. Hospital discharge and birth data were linked using probabilistic linkage methods for both mothers and babies. Matching rates were 98.5% and 99.0% for maternal birth and hospital discharge records, respectively, and 98.8% and 99.4% for baby records. Unmatched maternal records had higher proportions of Australian-born women, private hospital births and stillbirths compared with matched records. Unmatched baby records had higher proportions of low-birthweight babies, preterm births and in-hospital deaths than matched records. With the possible exception of stillbirths, these differences are unlikely to cause important bias in studies relying on matched records only. Our results suggest studies using linked data should generally examine and report on the characteristics of unmatched records, and recognise them as a potential source of bias.

Bias↗

The use of missing birth record data as a marker for adverse reproductive outcomes: a geocoded analysis of birth record data.

Adverse reproductive outcomes (AROs) disproportionately affect black American infants and significantly contribute to the U.S. infant mortality rate. Without accurate understanding of AROs, there remains little hope of ameliorating infant mortality rates or eliminating infant health disparities. However, despite the importance of monitoring infant mortality rates and health disparities, birth record data quality is not assured. Racial disparities in the reporting of birth record data have been documented, and missing birth record data for AROs appears to be disproportionate. Due to the extent of missing birth record data, innovative strategies have been developed to evaluate relationships between maternal socioeconomic status (SES) and community-based ARO rates. Because addresses convey aggregate information about income level, education and occupation, ZIP codes, census tracts and census block-groups have been applied to geocoding efforts. The goals of this study are to: 1) analyze the extent of missing birth record data for New Jersey areas with high rates of an ARO (preterm birth), 2) evaluate associations between the extent of missing birth record data and other AROs, and 3) consider how geocoding strategies could be applied to provide a basis for understanding maternal SES risk factors and ARO resource allocation for at-risk communities.

Adult↗

Accuracy of recorded birth and calving dates of dairy cattle in the United States.

Frequencies of births that were reported for specific days of the month were documented for US dairy cattle born since 1987 by birth year, herd size, and registry status and compared with calving frequencies for those dates. Because birth dates are expected to be random and uniformly distributed throughout each month, percentages of births on individual dates were expected to be equal (3.3% for d 1 to d 28, 3.2% for d 29, 3.0% for d 30, and 1.9% for d 31). However, percentages of reported birth dates for d 1, 2, 10, 15, and 20 were higher than expected. The percentage of reported births for d 1 was highest (5.3%) of all days of the month regardless of herd size or registry status. The nonuniform distribution of birth dates within month indicated that a substantial number of birth dates were unknown and that estimated birth dates had been reported. About one-third of the birth dates recorded on d 1 appeared to have been estimated, or altered to gain an advantage in cattle shows. The highest frequencies for birth dates on d 1 (5.9 to 7.4%) were found for registered cows during months that initiated age groupings for dairy shows (March, June, September, and December). Birth dates for some registered cows were intentionally misreported as confirmed by comparison of birth dates of individual cows with calving dates of their dams. Reported calving dates appeared to be more accurate than reported births; the inflated frequency of recorded calvings on d 1 was only about 30% as large as the inflated frequency of recorded births. Because cow age is determined by birth date, proper reporting of birth dates is important to ensure the accuracy of standardized yield and fitness records and the genetic evaluations that are based on those records. When animals' recorded birth dates and their dams' calving dates differ, more credence should be given to the latter to improve accuracy.

Age Distribution↗

Ascertainment of a mid-western US female adolescent twin cohort for alcohol studies: assessment of sample representativeness using birth record data.

Female twin pairs were identified from birth records, and their families invited to participate in a prospective study of the determinants of alcohol problems in women. We investigated sampling biases arising because of failure to locate families, or non-cooperation of families. Out of 2644 families with a live-born pair (born between July 1975 and December 1986) who survived beyond infancy, contact was established and a brief screening interview completed with 90% (N = 2380). Fewer than 6% of located families declined to participate in the initial screening interview. Predictors of failure to locate a family or to obtain a screening interview were identified from information recorded in birth records, and from neighborhood characteristics identified from 1990 US Census block group data for the family residence when the twins were born. African-American families were under-represented in the final sample, but this effect was barely significant when other variables were controlled for. Under-represented were families where the mother was 19 or younger at the birth of the twins, where the mother herself was born out-of-state, or where information about biological father was not reported in the birth record. Non-participating families on average came from neighborhoods with a higher proportion of residents living in poverty, and with a higher proportion of African-American residents. Sampling biases were however small. The unusual cooperativeness in research of families with twins persists.

Adolescent↗

HIPAA transition: challenges of a multisite medical records validation study of maternally linked birth records.

Numerous researchers have expressed concern over the impacts on medical records availability of the newly effective Medical Information Privacy rule, as authorized by the Health Insurance Portability and Accountability Act (HIPAA). The increased costs associated with compliance with the rule, and the increased potential for financial liability, raises the possibility that hospitals may be less likely to participate in such research, resulting in a decrease of the validity of multisite studies designed to represent an entire population. Our multisite medical record validation study, designed to assess the accuracy of maternally linked birth records, provides an overview of a number of HIPAA implementation challenges. We found that the new HIPAA rule presents new challenges for those who rely on the release of medical record information for epidemiologic research. At the very minimum, increased compliance costs associated with human subjects protection and increased administrative burden for researchers would seem to be inevitable as medical institutions address the requirements of the new HIPAA rule by instituting more complex and thus more cumbersome procedures. Researchers should anticipate increased costs and plan accordingly when budgeting for human subjects review processes.

Birth Certificates↗

A new method for measuring misclassification of maternal sets in maternally linked birth records: true and false linkage proportions.

OBJECTIVES: Numerous studies have used maternally linked birth records to investigate perinatal outcomes, maternal behaviors, and the quality of vital records birth data. Little attention has been given to assessing errors in the linkages and to understanding how such errors affect estimates derived from the linked data. The author developed a framework for conceptualizing maternal linkage error and measures for quantifying it, and examined the behavior of the new measures in a maternally linked file. METHODS: Linkage errors were conceptualized as misclassification, with the classes being the maternal sets (records classified as representing different births to the same woman). The true linkage proportion, analogous to sensitivity, was used to capture the degree to which all of a woman's births were assigned to a single maternal set; the false linkage proportion, analogous to specificity, was used to capture the degree to which the assigned maternal sets combined births from different women. The behavior of the two proportions was examined by introducing increasing degrees of linkage error into a maternally linked file. RESULTS: Both measures indicated greater misclassification with increasing simulated linkage errors. CONCLUSIONS: The new measures may be a useful tool for assessing the quality of maternally linked data, as well as other types of linked records where the linkages are within a single file. This is a necessary step towards developing methods for addressing misclassification bias in studies of maternally linked records through sensitivity analysis, adjustment, and other means.

Bias↗

Releasing pre-adoption birth records: the impact of Oregon's experience on its vital records department.

OBJECTIVE: In November 1998, Oregon voters passed Ballot Measure 58, which allowed Oregon adoptees > or = 21 years of age access to their original birth records, which are sealed at adoption. The objective of this study was to evaluate the impact of the measure on the Oregon Health Division (since renamed Oregon Health Services) by assessing procedures used and resources needed after implementation of Measure 58. METHODS: Vital records employees were interviewed about processing, storage, and archive retrieval procedures for pre-adoption birth records before, during, and after the implementation of Measure 58 and the effect on their usual workload. Personnel time, space, and fiscal resources used to process requests for pre-adoption records were also calculated. RESULTS: The Oregon Health Division began to receive requests from adoptees immediately following the passage of Measure 58 in November 1998, but due to legal challenges, they could not be processed until May 31, 2000. From June 2, 2000, through October 20, 2000, 12 staff members and two supervisors issued more than 4,700 pre-adoption birth records while also processing their normal workload, which averages more than 135,400 vital record orders annually. Due to the need for retrieval from archives, requests for pre-adoption birth records were estimated to take 75 hours to process vs. 2-3 minutes for standard requests. Each batch of approximately 75 pre-adoption birth records required approximately 12.5 person-hours from vital records staff and 3-4 person-hours from archive personnel; in addition, supervisors spent time responding to incomplete orders, informing the public and the media, and responding to concerns of adoptees, birth parents, and adoptive parents. Fewer than 1% of requests went unfilled. CONCLUSIONS: Implementation of Measure 58 utilized substantial resources of the Oregon Health Division. States contemplating similar legislation should consider increasing personnel and resources, preparing for intense public and media interest, and reorganizing the storage of adoptees' original birth records so they are easily retrieved.

Access to Information↗

Releasing pre-adoption birth records: a survey of Oregon adoptees.

OBJECTIVE: In June 2000, Oregon implemented a citizen-initiated ballot measure that grants adult adoptees access to their birth records, which contain their birth parents' identifying information. Because other states are considering similar policy changes, the authors explored whether Oregon's new law is meeting the information needs of adoptees. METHODS: Birth records were abstracted for a 9% (221/2,529) random sample of adoptees who obtained their records from June 20, 2000, to July 20, 2000, to describe the population and the information they obtained. Telephone interviews documented their motivations, expectations, and whether they considered the birth record useful. RESULTS: The mean age of the adoptees was 41 years, 64% were female, and 97% were white. Virtually all received information about their birth mother; however, only one-third received information about their birth father. Of the 221 sampled, 123 (59%) participated in the telephone survey, 12 were ineligible, 84 could not be reached, and 2 refused. The most common motivations for requesting records were to find birth parents (29%) and to obtain medical information (29%). Twenty-nine percent received less information than they expected, with many expecting, but not receiving, birth father information. Thirty-three (47%) of the 70 adoptees who tried to find their birth mother were successful. The records were considered "very" useful by 52% of respondents, "somewhat" or "a little" useful by 42%, and "not at all" useful by 6%. CONCLUSIONS: The results indicate that many adoptees received less information than they expected, and many did not meet their goals of finding birth parents or obtaining medical information. Nonetheless, the majority considered their birth records useful and important.

Access to Information↗

Seasonal breeding in humans: birth records of the Labrador Eskimo.

Moravian missionaries recorded all births in two Eskimo communities in northern Labrador from 1778 to 1940. These records demonstrate an annual cycle in births characterized by a peak in March, a trough in June, with an amplitude of 80%; they agree with previous observations on seasonal breeding among the Eskimo made by early Arctic explorers.

Birth Rate↗

The proportion of adoptees who have received their birth records in England and Wales.

Over 70 thousand adults who were adopted in out-of-family adoptions have received their original birth records from ONS since The Children Act, 1975 (Section 26) first enabled them to do so. This article describes how estimates of these adoptees have been made by their year of birth and year of receiving their birth record. It then analyses the trends, with particular reference to the theory that adoption can cause deep-seated psychological problems, setting them within the historical context of adoption in this century.

Adolescent↗

Using linked program and birth records to evaluate coverage and targeting in Tennessee's WIC program.

Public health nutrition programs are intended to serve low-income families who are at greater nutritional risk than the general population. Not all persons who are program-eligible are at equal risk, however. It would be desirable to evaluate a program's ability to enroll persons from higher risk backgrounds in the population (coverage) and, conversely, the extent to which those enrolled in this program are at higher risk (targeting). A method for the evaluation of coverage and targeting was developed using data from the Tennessee Women, Infants, and Children Special Supplemental Food Program (WIC) linked with birth certificates. The linked computer file was created by matching the name and date of birth in both record files. The birth records were the common source of information used to characterize the risk background for both the WIC and non-WIC participants. Maternal sociodemographic information on the birth records was used to define the health risk background of each child. The coverage and targeting of "at-risk" children were computed and compared for 50 counties or county-aggregates in Tennessee. Considerable variation in the coverage and targeting rates of at-risk children was observed among Tennessee counties, although the counties within each WIC administrative region tended to have similar coverage and targeting patterns. Using the existing data in linked program and vital records provides a direct evaluation of a program. Coverage and targeting evaluation can be used to detect underserved populations within small geographic areas.

Birth Certificates↗

Mother's consent to linkage of survey data with her child's birth records in a multi-ethnic national cohort study.

BACKGROUND: The increased use of computer-based records has facilitated linkage of routine data with that obtained for research. When children are involved, parental consent for linkage is usually required. The Millennium Cohort Study, of 18,819 UK babies born in 2000-02, over-sampled families from disadvantaged and ethnic wards, providing the opportunity to investigate factors associated with mother's consent to access her child's birth records. METHODS: Factors considered included ward type and mother's socioeconomic status, ethnicity, education, age, and language. Logistic regression was used to investigate the relationship of these factors with consent. RESULTS: Consent for linkage to birth register and/or hospital maternity data was obtained from 92% of the cohort mothers. The proportions consenting differed according to the mother's country of residence, age, and education, with consent being less likely among minority ethnic group mothers, lone parents, and those with higher degrees or no qualifications. Where interviews had been translated, consent was significantly less likely if the interpreter was a male. CONCLUSION: A large proportion of mothers who were interviewed gave permission for linkage. However, there were some groups who were less likely to do so, particularly those from minority ethnic groups. These sources of non-consent bias should be taken into account when analysing linked data from socially and ethnically mixed populations. Efforts should be made to understand the reasons for non-consent, which in turn will help determine the best ways to encourage more mothers to consent in future.

Adolescent↗

A birth records analysis of the Maternal Infant Health Advocate Service program: a paraprofessional intervention aimed at addressing infant mortality in African Americans.

Recognizing that no single intervention was likely to eliminate racial disparities, the Genesee County REACH 2010 partnership, utilizing both "bench" science and "trench" knowledge, developed 13 broad-based, multi-faceted interventions to eliminate infant mortality. This article provides highlights from a recent birth records comparison analysis of the Maternal Infant Health Advocate Service (MIHAS) intervention, and is solely based on the records of 111 MIHAS clients, and a random sample of 350 African-American women residing in Flint, Michigan. The MIHAS clients were more likely than the comparison sample not to have graduated from high school (56% vs 35%, respectively, P<.0001). The MIHAS clients were more likely to report at least some smoking during pregnancy (20% vs 15%, respectively, P<.05). However, after controlling for age and education, these results were no longer statistically significant. In terms of birth outcomes, the comparative odds of MIHAS clients delivering a low birth-weight infant are 1.124 (95% CI: 0.620-2.038); the odds of their delivering an infant at 37 weeks or earlier are 1.032 (0.609-1.749). Although the MIHAS clients did not have statistically better birth outcomes than those of the general African-American population in Flint, the MIHAS clients did not demonstrate the outcomes one would expect, given their higher level of risk. Based on this analysis, the MIHAS intervention may have brought its clients "up to par" with the general community on several birth outcomes.

Adolescent↗

Completeness of the discharge diagnoses as a measure of birth defects recorded in the hospital birth record.

Licensed hospitals usually maintain a discharge diagnoses index, which provides an inexpensive tool for the surveillance of birth defects diagnosed shortly after birth. Government agencies in several states routinely use discharge diagnoses for this purpose. To evaluate the completeness of the discharge diagnoses, the authors compared birth defects noted in the discharge diagnoses with those noted anywhere in the hospital birth record in a cohort of 3,421 infants born to US Army veterans from 1966 to 1986. In this cohort, 237 birth defect cases were documented in hospital birth records, and 49% of those cases were missed in the discharge diagnoses (28% of major defect cases and 66% of minor defect cases). The extent of missed defects varied greatly by organ system and by specific defect. Significant predictors of a missed defect were the presence of multiple defects, female sex, and western region of birth. The underascertainment of defects in the discharge diagnoses should be considered in the development and operation of surveillance systems using this source of data.

Abnormalities, Multiple↗

[Neonatal information system I: computer-adapted pregnancy and birth record (author's transl)].

A computerized documentation system for the main perinatal data of the newborn is presented. The information about pregnancy and birth are recorded on two optic mark reader forms. They can be used as a part of the conventional patient's history and as a transport document. The forms are recorded by simple pencil marking without further clerical effort for the staff. A direct data processing of the marked informations is possible with a computer. After two years' use of the new documentation system our information about the admitted newborns had markedly improved. An early regstration of pre- and pernatal risk factors is possible.

Electronic Data Processing↗