Birth, stillbirth and death registration data completeness, quality and utility in population-based surveys: EN-INDEPTH study.
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ABSTRACT: Background
Birth registration is a child's first right. Registration of live births, stillbirths and deaths is foundational for national planning. Completeness of birth registration for live births in low- and middle-income countries is measured through population-based surveys which do not currently include completeness of stillbirth or death registration.Methods
The EN-INDEPTH population-based survey of women of reproductive age was undertaken in five Health and Demographic Surveillance System sites in Bangladesh, Ethiopia, Ghana, Guinea-Bissau and Uganda (2017-2018). In four African sites, we included new/modified questions regarding registration for 1177 stillbirths and 11,881 livebirths (1333 neonatal deaths and 10,548 surviving the neonatal period). Questions were evaluated for completeness of responses, data quality, time to administer and estimates of registration completeness using descriptive statistics. Timing of birth registration, factors associated with non-registration and reported barriers were assessed using descriptive statistics and logistic regression.Results
Almost all women, irrespective of their baby's survival, responded to registration questions, taking an average of ?70% of stillbirths occurring in facilities, only 2.5% were reported as registered.Conclusions
Questions on birth, stillbirth and death registration were feasible in a household survey. Completeness of birth registration is low in all four sites, but stillbirth and neonatal death registration was very low. Closing the registration gap amongst facility births could increase registration of both livebirths and facility deaths, including stillbirths, but will require co-ordination between civil registration systems and the often over-stretched health sector. Investment and innovation is required to capture birth and especially deaths in both facility and community systems.
SUBMITTER: Kasasa S
PROVIDER: S-EPMC7869445 | biostudies-literature | 2021 Feb
REPOSITORIES: biostudies-literature
Publications
Birth, stillbirth and death registration data completeness, quality and utility in population-based surveys: EN-INDEPTH study.
Kasasa Simon S Natukwatsa Davis D Galiwango Edward E Nareeba Tryphena T Gyezaho Collins C Fisker Ane Baerent AB Mengistu Mezgebu Yitayal MY Dzabeng Francis F Haider M Moinuddin MM Yargawa Judith J Akuze Joseph J Baschieri Angela A Cappa Claudia C Jackson Debra D Lawn Joy E JE Blencowe Hannah H Kajungu Dan D
Population health metrics 20210208 Suppl 1
<h4>Background</h4>Birth registration is a child's first right. Registration of live births, stillbirths and deaths is foundational for national planning. Completeness of birth registration for live births in low- and middle-income countries is measured through population-based surveys which do not currently include completeness of stillbirth or death registration.<h4>Methods</h4>The EN-INDEPTH population-based survey of women of reproductive age was undertaken in five Health and Demographic Sur ...[more]
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Project description:BackgroundAn estimated 40% of pregnancies globally are unintended. Measurement of pregnancy intention in low- and middle-income countries relies heavily on surveys, notably Demographic and Health Surveys (DHS), yet few studies have evaluated survey questions. We examined questions for measuring pregnancy intention, which are already in the DHS, and additional questions and investigated associations with maternity care utilisation and adverse pregnancy outcomes.MethodsThe EN-INDEPTH study surveyed 69,176 women of reproductive age in five Health and Demographic Surveillance System sites in Ghana, Guinea-Bissau, Ethiopia, Uganda and Bangladesh (2017-2018). We investigated responses to survey questions regarding pregnancy intention in two ways: (i) pregnancy-specific intention and (ii) desired-versus-actual family size. We assessed data completeness for each and level of agreement between the two questions, and with future fertility desire. We analysed associations between pregnancy intention and number and timing of antenatal care visits, place of delivery, and stillbirth, neonatal death and low birthweight.ResultsMissing data were <2% in all questions. Responses to pregnancy-specific questions were more consistent with future fertility desire than desired-versus-actual family size responses. Using the pregnancy-specific questions, 7.4% of women who reported their last pregnancy as unwanted reported wanting more children in the future, compared with 45.1% of women in the corresponding desired family size category. Women reporting unintended pregnancies were less likely to attend 4+ antenatal care visits (aOR 0.73, 95% CI 0.64-0.83), have their first visit during the first trimester (aOR 0.71, 95% CI 0.63-0.79), and report stillbirths (aOR 0.57, 95% CI 0.44-0.73) or neonatal deaths (aOR 0.79, 95% CI 0.64-0.96), compared with women reporting intended pregnancies. We found no associations for desired-versus-actual family size intention.ConclusionsWe found the pregnancy-specific intention questions to be a much more reliable assessment of pregnancy intention than the desired-versus-actual family size questions, despite a reluctance to report pregnancies as unwanted rather than mistimed. The additional questions were useful and may complement current DHS questions, although these are not the only possibilities. As women with unintended pregnancies were more likely to miss timely and frequent antenatal care, implementation research is required to improve coverage and quality of care for those women.
| S-EPMC7869206 | biostudies-literature
Project description:BackgroundLow birthweight (< 2500 g) is an important marker of maternal health and is associated with neonatal mortality, long-term development and chronic diseases. Household surveys remain an important source of population-based birthweight information, notably Demographic and Health Surveys (DHS) and UNICEF's Multiple Indicator Cluster Surveys (MICS); however, data quality concerns remain. Few studies have addressed how to close these gaps in surveys.MethodsThe EN-INDEPTH population-based survey of 69,176 women was undertaken in five Health and Demographic Surveillance System sites (Matlab-Bangladesh, Dabat-Ethiopia, Kintampo-Ghana, Bandim-Guinea-Bissau, IgangaMayuge-Uganda). Responses to existing DHS/MICS birthweight questions on 14,411 livebirths were analysed and estimated adjusted odds ratios (aORs) associated with reporting weighing, birthweight and heaping reported. Twenty-eight focus group discussions with women and interviewers explored barriers and enablers to reporting birthweight.ResultsAlmost all women provided responses to birthweight survey questions, taking on average 0.2 min to answer. Of all babies, 62.4% were weighed at birth, 53.8% reported birthweight and 21.1% provided health cards with recorded birthweight. High levels of heterogeneity were observed between sites. Home births and neonatal deaths were less likely to be weighed at birth (home births aOR 0.03(95%CI 0.02-0.03), neonatal deaths (aOR 0.19(95%CI 0.16-0.24)), and when weighed, actual birthweight was less likely to be known (aOR 0.44(95%CI 0.33-0.58), aOR 0.30(95%CI 0.22-0.41)) compared to facility births and post-neonatal survivors. Increased levels of maternal education were associated with increases in reporting weighing and knowing birthweight. Half of recorded birthweights were heaped on multiples of 500 g. Heaping was more common in IgangaMayuge (aOR 14.91(95%CI 11.37-19.55) and Dabat (aOR 14.25(95%CI 10.13-20.3) compared to Bandim. Recalled birthweights were more heaped than those recorded by card (aOR 2.59(95%CI 2.11-3.19)). A gap analysis showed large missed opportunity between facility birth and known birthweight, especially for neonatal deaths. Qualitative data suggested that knowing their baby's weight was perceived as valuable by women in all sites, but lack of measurement and poor communication, alongside social perceptions and spiritual beliefs surrounding birthweight, impacted women's ability to report birthweight.ConclusionsSubstantial data gaps remain for birthweight data in household surveys, even amongst facility births. Improving the accuracy and recording of birthweights, and better communication with women, for example using health cards, could improve survey birthweight data availability and quality.
| S-EPMC7869202 | biostudies-literature
Project description:BackgroundPreterm birth (gestational age (GA) <37 weeks) is the leading cause of child mortality worldwide. However, GA is rarely assessed in population-based surveys, the major data source in low/middle-income countries. We examined the performance of new questions to measure GA in household surveys, a subset of which had linked early pregnancy ultrasound GA data.MethodsThe EN-INDEPTH population-based survey of 69,176 women was undertaken (2017-2018) in five Health and Demographic Surveillance System sites in Bangladesh, Ethiopia, Ghana, Guinea-Bissau and Uganda. We included questions regarding GA in months (GAm) for all women and GA in weeks (GAw) for a subset; we also asked if the baby was 'born before expected' to estimate preterm birth rates. Survey data were linked to surveillance data in two sites, and to ultrasound pregnancy dating at <24 weeks in one site. We assessed completeness and quality of reported GA. We examined the validity of estimated preterm birth rates by sensitivity and specificity, over/under-reporting of GAw in survey compared to ultrasound by multinomial logistic regression, and explored perceptions about GA and barriers and enablers to its reporting using focus group discussions (n = 29).ResultsGAm questions were almost universally answered, but heaping on 9 months resulted in underestimation of preterm birth rates. Preference for reporting GAw in even numbers was evident, resulting in heaping at 36 weeks; hence, over-estimating preterm birth rates, except in Matlab where the peak was at 38 weeks. Questions regarding 'born before expected' were answered but gave implausibly low preterm birth rates in most sites. Applying ultrasound as the gold standard in Matlab site, sensitivity of survey-GAw for detecting preterm birth (GAw <37) was 60% and specificity was 93%. Focus group findings suggest that women perceive GA to be important, but usually counted in months. Antenatal care attendance, women's education and health cards may improve reporting.ConclusionsThis is the first published study assessing GA reporting in surveys, compared with the gold standard of ultrasound. Reporting GAw within 5 years' recall is feasible with high completeness, but accuracy is affected by heaping. Compared to ultrasound-GAw, results are reasonably specific, but sensitivity needs to be improved. We propose revised questions based on the study findings for further testing and validation in settings where pregnancy ultrasound data and/or last menstrual period dates/GA recorded in pregnancy are available. Specific training of interviewers is recommended.
| S-EPMC7869446 | biostudies-literature
Project description:BackgroundHousehold surveys remain important sources of stillbirth data, but omission and misclassification are common. Classifying adverse pregnancy outcomes as stillbirths requires accurate reporting of vital status at birth and gestational age or birthweight for every pregnancy. Further categorisation, e.g. by sex, or timing (intrapartum/antepartum) improves data to understand and prevent stillbirth.MethodsWe undertook a cross-sectional population-based survey of women of reproductive age in five health and demographic surveillance system sites in Bangladesh, Ethiopia, Ghana, Guinea-Bissau and Uganda (2017-2018). All women answered a full birth history with pregnancy loss questions (FBH+) or a full pregnancy history (FPH). A sub-sample across both groups were asked additional stillbirth questions. Questions were evaluated using descriptive measures. Using an interpretative paradigm and phenomenology methodology, focus group discussions with women exploring barriers to reporting birthweight for stillbirths were conducted. Thematic analysis was guided by an a priori codebook.ResultsOverall 69,176 women reported 98,483 livebirths (FBH+) and 102,873 pregnancies (FPH). Additional questions were asked for 1453 stillbirths, 1528 neonatal deaths and 12,620 surviving children born in the 5 years prior to the survey. Completeness was high (> 99%) for existing FBH+/FPH questions on signs of life at birth and gestational age (months). Discordant responses in signs of life at birth between different questions were common; nearly one-quarter classified as stillbirths on FBH+/FPH were reported born alive on additional questions. Availability of information on gestational age (weeks) (58.1%) and birthweight (13.2%) was low amongst stillbirths, and heaping was common. Most women (93.9%) were able to report the sex of their stillborn baby. Response completeness for stillbirth timing (18.3-95.1%) and estimated proportion intrapartum (15.6-90.0%) varied by question and site. Congenital malformations were reported in 3.1% stillbirths. Perceived value in weighing a stillborn baby varied and barriers to weighing at birth a nd knowing birthweight were common.ConclusionsImproving stillbirth data in surveys will require investment in improving the measurement of vital status, gestational age and birthweight by healthcare providers, communication of these with women, and overcoming reporting barriers. Given the large burden and effect on families, improved data must be made available to end preventable stillbirths.
| S-EPMC7869203 | biostudies-literature
Project description:BackgroundHousehold surveys remain important sources of maternal and child health data, but until now, standard surveys such as Demographic and Health Surveys (DHS) have not collected information on maternity care for women who have experienced a stillbirth. Thus, nationally representative data are lacking to inform programmes to address the millions of stillbirths which occur annually.MethodsThe EN-INDEPTH population-based survey of women of reproductive age was undertaken in five Health and Demographic Surveillance System sites in Bangladesh, Ethiopia, Ghana, Guinea-Bissau and Uganda (2017-2018). All women answered a full birth history with additional questions on pregnancy losses (FBH+) or full pregnancy history (FPH). A sub-sample, including all women reporting a recent stillbirth or neonatal death, was asked additional maternity care questions. These were evaluated using descriptive measures. Associations between stillbirth and maternal socio-demographic characteristics, babies' characteristics and maternity care use were assessed using a weighted logistic regression model for women in the FBH+ group.ResultsA total of 15,591 women reporting a birth since 1 January 2012 answered maternity care questions. Completeness was very high (> 99%), with similar proportions of responses for both live and stillbirths. Amongst the 14,991 births in the FBH+ group, poorer wealth status, higher parity, large perceived baby size-at-birth, preterm or post-term birth, birth in a government hospital compared to other locations and vaginal birth were associated with increased risk of stillbirth after adjusting for potential confounding factors. Regarding association with reported postnatal care, women with a stillbirth were more likely to report hospital stays of > 1 day. However, women with a stillbirth were less likely to report having received a postnatal check compared to those with a live birth.ConclusionsWomen who had experienced stillbirth were able to respond to questions about pregnancy and birth, and we found no reason to omit questions to these women in household surveys. Our analysis identified several potentially modifiable factors associated with stillbirth, adding to the evidence-base for policy and action in low- and middle-income contexts. Including these questions in DHS-8 would lead to increased availability of population-level data to inform action to end preventable stillbirths.
| S-EPMC7869205 | biostudies-literature
Project description:IntroductionMany national and subnational governments need to routinely measure the completeness of death registration for monitoring and statistical purposes. Existing methods, such as death distribution and capture-recapture methods, have a number of limitations such as inaccuracy and complexity that prevent widespread application. This paper presents a novel empirical method to estimate completeness of death registration at the national and subnational level.MethodsRandom-effects models to predict the logit of death registration completeness were developed from 2,451 country-years in 110 countries from 1970-2015 using the Global Burden of Disease 2015 database. Predictors include the registered crude death rate, under-five mortality rate, population age structure and under-five death registration completeness. Models were developed separately for males, females and both sexes.FindingsAll variables are highly significant and reliably predict completeness of registration across a wide range of registered crude death rates (R-squared 0.85). Mean error is highest at medium levels of observed completeness. The models show quite close agreement between predicted and observed completeness for populations outside the dataset. There is high concordance with the Hybrid death distribution method in Brazilian states. Uncertainty in the under-five mortality rate, assessed using the dataset and in Colombian departmentos, has minimal impact on national level predicted completeness, but a larger effect at the subnational level.ConclusionsThe method demonstrates sufficient flexibility to predict a wide range of completeness levels at a given registered crude death rate. The method can be applied utilising data readily available at the subnational level, and can be used to assess completeness of deaths reported from health facilities, censuses and surveys. Its utility is diminished where the adult mortality rate is unusually high for a given under-five mortality rate. The method overcomes the considerable limitations of existing methods and has considerable potential for widespread application by national and subnational governments.
| S-EPMC5976169 | biostudies-literature
Project description:Civil registration of vital events such as deaths and births is a key part of the process of securing rights and benefits for individuals worldwide. It also enables the production of vital statistics for local planning of social services. In many low- and lower-middle-income countries, however, civil registration and vital statistics (CRVS) systems do not adequately register significant numbers of births and, especially, deaths. In this study, we aim to estimate the completeness of adult death registration (for age 15 and older) in the Matlab health and demographic surveillance system (HDSS) area in Bangladesh and to identify reasons for (not) registering deaths in the national CRVS system. We conducted a sample survey of 2538 households and recorded 571 adult deaths that had occurred in the 3 years preceding the survey. Only 17% of these deaths were registered in the national CRVS system, with large gender differences in registration rates (male = 26% vs. female = 5%). Respondents who reported that a recent death in the household was registered indicated that the primary reasons for registration were to secure an inheritance and to access social services. The main reasons cited for not registering a death were lack of knowledge about CRVS and not perceiving the benefits of death registration. Information campaigns to raise awareness of death registration, as well as stronger incentives to register deaths, may be needed to improve the completeness of death registration in Bangladesh.Supplementary informationThe online version contains supplementary material available at 10.1186/s41118-021-00125-7.
| S-EPMC8295546 | biostudies-literature
Project description:BackgroundEstimates of completeness of death registration are crucial to produce estimates of life tables and population projections and to estimate the burden of disease. They are an important step in assessing the quality of data. In the case of subnational data analysis in Brazil, it is important to consider spatial and temporal variation in the quality of mortality data. There are two main sources of data quality evaluation in Brazil, but there are few comparative studies and how they evolve over time. The aim of the paper is to compare and discuss alternative estimates of completeness of death registration, adult mortality (45q15) and life expectancy estimates produced by the National Statistics Office (IBGE), Institute for Health Metrics and Evaluation (IHME), and estimates presented in Queiroz et al. (2017) and Schmertmann and Gonzaga (2018), for 1980 and 2010.MethodsWe provide a descriptive and comparative analysis of aforementioned estimates from four (4) sources of estimates at subnational level (26 states and one Federal District) in Brazil from two different points in time.ResultsWe found significant differences in estimates that affect both levels and trends of completeness of adult mortality in Brazil and states. IHME and Queiroz et al. (2017) estimates converge by 2010, but there are large differences when compared to estimates from the National Statistics Office (IBGE). Larger differences are observed for less developed states. We have showed that the quality of mortality data in Brazil has improved steadily overtime, but with large regional variations. However, we have observed that IBGE estimates show the lowest levels of completeness for the Northern of the country compared to other estimates. Choice of methods and approaches might lead to very unexpected results.ConclusionWe produced a detailed comparative analysis of estimates of completeness of death registration from different sources and discuss the main results and possible explanations for these differences. We have also showed that new improved methods are still needed to study adult mortality in less developed countries and at a subnational level. More comparative studies are important in order to improve quality of estimates in Brazil.
| S-EPMC7525963 | biostudies-literature
Project description:One of the fundamental building blocks for determining the burden of disease in populations is to reliably measure the level and pattern of mortality by age and sex. Where well-functioning registration systems exist, this task is relatively straightforward. Results from many civil registration systems, however, remain uncertain because of a lack of confidence in the completeness of death registration. Incomplete registration systems mean not all deaths are counted, and resulting estimates of death rates for the population are then underestimated. Death distribution methods (DDMs) are a suite of demographic methods that attempt to estimate the fraction of deaths that are registered and counted by the civil registration system. Although widely applied and used, the methods have at least three types of limitations. First, a wide range of variants of these methods has been applied in practice with little scientific literature to guide their selection. Second, the methods have not been extensively validated in real population conditions where violations of the assumptions of the methods most certainly occur. Third, DDMs do not generate uncertainty intervals.In this paper, we systematically evaluate the performance of 234 variants of DDM methods in three different validation environments where we know or have strong beliefs about the true level of completeness of death registration. Using these datasets, we identify three variants of the DDMs that generally perform the best. We also find that even these improved methods yield uncertainty intervals of roughly +/- one-quarter of the estimate. Finally, we demonstrate the application of the optimal variants in eight countries.There continues to be a role for partial vital registration data in measuring adult mortality levels and trends, but such results should only be interpreted alongside all other data sources on adult mortality and the uncertainty of the resulting levels, trends, and age-patterns of adult death considered. Please see later in the article for the Editors' Summary.
| S-EPMC2854130 | biostudies-literature
Project description:BackgroundDeath registration completeness has never been assessed at the county level in China. Such analyses would provide critical intelligence to monitor the performance of the vital registration system and yield adjustment factors to correct death registration data, thereby increasing their policy utility.MethodsWe estimated the completeness of death registration for 31 provinces and 2844 counties of China in 2018 based on death data from the China Cause of Death Reporting System (CDRS) by using the empirical completeness method. We computed the root mean square difference (RMSD) of county-level completeness compared with provincial-level completeness to study intra-provincial variations. A two-level (province and county) logistic regression model was fitted to explore the association between county-level registration completeness and a set of covariates reflecting socioeconomic status, healthcare quality, and specific strategies and regulations designed to improve registration.ResultsIn 2018, the overall death registration completeness for the CDRS in China was 74.2% (95% uncertainty interval [UI] 66.2-80.4), with very little difference for males and females. Geographical differences in completeness were higher across counties than across provinces. The county-level completeness ranged from 2.4% (95% UI 1.0-5.0%) in Burang County, Tibet, to 100.0% (95% UI 99.9-100.0%) in Guandu District, Yunnan. The coastal provinces of Jiangsu, Guangdong, and Fujian, with higher overall completeness, contained counties with low completeness; conversely, the underdeveloped provinces of Guangxi and Guizhou, with lower overall completeness, included some counties with high completeness. GDP, education, population density, minority population, healthcare access, and registration strategies were important drivers of the geographical differences in registration completeness.ConclusionsThere are marked inequalities in registration completeness at the county level and within provinces in China. The socioeconomic condition, the implementation of specific registration-enhancing initiatives, and the availability and quality of medical care were the primary drivers of the observed geographical variation. A more strategic approach, with more research, is required to identify the main reasons for death under-reporting, especially in the poorer performing counties, to guide remedial action.
| S-EPMC7333385 | biostudies-literature