Making stillbirths count, making numbers talk - Issues in data collection for stillbirths (original) (raw)
Related papers
Stillbirths: Where? When? Why? How to make the data count
Lancet, 2011
for The Lancet's Stillbirths Series steering committee* Despite increasing attention and investment for maternal, neonatal, and child health, stillbirths remain invisible-not counted in the Millennium Development Goals, nor tracked by the UN, nor in the Global Burden of Disease metrics. At least 2·65 million stillbirths (uncertainty range 2·08 million to 3·79 million) were estimated worldwide in 2008 (≥1000 g birthweight or ≥28 weeks of gestation). 98% of stillbirths occur in low-income and middle-income countries, and numbers vary from 2·0 per 1000 total births in Finland to more than 40 per 1000 total births in Nigeria and Pakistan. Worldwide, 67% of stillbirths occur in rural families, 55% in rural sub-Saharan Africa and south Asia, where skilled birth attendance and caesarean sections are much lower than that for urban births. In total, an estimated 1·19 million (range 0·82 million to 1·97 million) intrapartum stillbirths occur yearly. Most intrapartum stillbirths are associated with obstetric emergencies, whereas antepartum stillbirths are associated with maternal infections and fetal growth restriction. National estimates of causes of stillbirths are scarce, and multiple (>35) classifi cation systems impede international comparison. Immediate data improvements are feasible through household surveys and facility audit, and improvements in vital registration, including specifi c perinatal certifi cates and revised International
Tropical Medicine and International Health, 2017
OBJECTIVE: To systematically map data availability for stillbirths from all countries with Demographic and Health Surveys (DHS) surveys to outline the limitations and challenges with using the data for understanding the determinants and causes of stillbirths, and for cross-country comparisons. METHODS: We assessed data sources from the DHS programme website, including published DHS reports and their associated questionnaires for surveys completed between 2005 and 2015. RESULTS: Between 2005 and 2015, the DHS programme completed 114 surveys across 70 low- and middle-income countries. Ninety-eight (86.0%) surveys from 66 countries collected stillbirth data adequately to calculate a stillbirth rate, while 16 surveys from 12 countries did not. The method used to count stillbirths varied; 96 (84.2%) surveys used a live birth history with a reproductive calendar, while 16 (14.0%) surveys from 12 countries did a full pregnancy history. Based on assessment of questionnaires, antenatal and delivery care information for stillbirths was only available in 15 surveys (13.2%) from 12 countries (17.1%). Data on maternal conditions/complications were captured in 17 surveys (16.0%), but only in six could these be linked to stillbirths. Data on other recognised risk factors were scarce, varying considerably across surveys. Upon further examination of data sets from surveys with maternity care data on non-live births, we found incomplete capture of these data; only two surveys had adequately and completely collected these for stillbirths. CONCLUSION: Substantial variation exists in DHS surveys in the measurement of stillbirths, with limited scope to examine risk factors or causes. Without immediate improvements, our understanding of country-specific trends and determinants for stillbirths will remain hampered, limiting the development and prioritisation of programmatic interventions to prevent these deaths.
Stillbirth outcome capture and classification in population-based surveys: EN-INDEPTH study
Population Health Metrics
Background Household 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. Methods We 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 reportin...
2021
Worldwide, an estimated 5.1 million stillbirths and neonatal deaths occur annually, 98% in low- and middle-income countries. Limited coverage of civil and vital registration systems necessitates reliance on women’s retrospective reporting in household surveys for data on these deaths. The predominant platform, Demographic and Health Surveys (DHS), has evolved over the last 35 years and differs by country, yet no previous study has described these differences and the effects of these changes on stillbirth and neonatal death measurement. We undertook a review of DHS model questionnaires, protocols and methodological reports from DHS-I to DHS-VII, focusing on the collection of information on stillbirth and neonatal deaths describing differences in approaches, questionnaires and geographic reach up to December 9, 2019. We analysed the resultant data, applied previously used data quality criteria including ratios of stillbirth rate (SBR) to neonatal mortality rate (NMR) and early NMR (EN...
Stillbirth rates: delivering estimates in 190 countries
The Lancet, 2006
Background While information about 4 million neonatal deaths worldwide is limited, even less information is available for stillbirths (babies born dead in the last 12 weeks of pregnancy) and there are no published, systematic global estimates. We sought to identify available data and use these to estimate the rates and numbers of stillbirths for 190 countries for the year 2000, and provide uncertainty estimates. Methods We assessed three sources of stillbirth data according to specifi ed inclusion criteria: vital registration; demographic and health surveys (DHS), based on a new analysis of contraceptive calendar data; and study reports that include published studies identifi ed through systematic literature searches of more than 30 000 abstracts and unpublished studies. A random eff ects regression model was developed to predict national stillbirth rates and associated uncertainty intervals. Findings Data from 44 countries with vital registration (71 442 stillbirths), 30 DHS surveys from 16 countries (2989 stillbirths), and 249 study populations from 103 countries (93 023 stillbirths) met the inclusion criteria. Modelbased estimates were used for 128 countries. For 62 countries, the observed values were adjusted by a correction factor derived from the model. The resultant stillbirth rates ranged from fi ve per 1000 in rich countries to 32 per 1000 in south Asia and sub-Saharan Africa. The estimated number of global stillbirths is 3•2 million (uncertainty range 2•5-4•1 million). In light of the data limitations and the conservative approach taken, the real number might be higher than this. Interpretation The numbers of stillbirths are high and there is a dearth of usable data in countries and regions in which most stillbirths occur, with under-reporting being a major challenge. Although our estimates are probably underestimates, they represent a rigorous attempt to measure the numbers of babies dying during the last trimester of pregnancy. Improving stillbirth data is the fi rst step towards making stillbirths count in public-health action.
Stillbirths: rates, risk factors, and acceleration towards 2030
The Lancet, 2016
There were an estimated 2.7 million third trimester stillbirths in 2015 (uncertainty range: 2.5-3.0 million). Stillbirths have reduced more slowly than maternal or child mortality, which were explicitly targeted in the Millennium Development Goals. The Every Newborn Action Plan targets ≤12 stillbirths per 1000 births in every country by 2030. Ninety-two mainly high-income countries have already met this target, although with marked disparities. At least 67 countries, particularly in Africa and conflict affected areas will have to double current progress. Most (98%) stillbirths are in low and middle-income countries. Improved care at birth is essential to prevent 1.3 million intrapartum stillbirths, end preventable maternal and neonatal deaths, and also improve child development. Estimates for stillbirth causation are impeded by multiple classification systems, but for 18 countries with reliable data, congenital abnormalities account for a median of only 7.4%. Many conditions associated with stillbirths are potentially modifiable, and often co-exist such as maternal infections (population attributable fraction (PAF): malaria 8.2%, syphilis 7.7%), non-communicable diseases, nutrition and lifestyle factors (PAF around 10%) and age>35yrs (PAF: 6.7%). Common causal pathways are through impaired placental function, either leading to fetal growth restriction and/or preterm labour, or secondary to prolonged pregnancy (PAF: 14.2%). Two-thirds of newborns have their birth registered. However, less than 5% of neonatal deaths have death registration, and even fewer stillbirths. Recording and registering all facility births, stillbirths, neonatal, and maternal deaths would substantially increase data availability. Improved data alone will not save lives, but provide a tool for targeting interventions to reach >7500 women every day all over the world who experience the reality of stillbirth. Words 266 CONFIDENTIAL-DO NOT PASS ON OR CITE 3 Key messages What is happening to stillbirth rates? At the end of the Millennium Development Goal (MDG) era there are 2.7 million (uncertainty range: 2.5-3.0 million) third trimester stillbirths annually. Stillbirth rates have declined more slowly since 2000 (Average Annual Rate of Reduction (ARR), 1.8%), than either maternal (ARR=3.4%) or post-neonatal child mortality (ARR=4.5%) which had MDG targets and consequently received more global and country level attention. Better data are essential to accelerate progress towards the target of ≤12 stillbirths per 1000 births in every country by 2030 as outlined in the Every Newborn Action Plan (ENAP), linked to United Nations Secretary General's Every Woman Every Child. Where to focus? 10 countries account for two-thirds of stillbirths and most neonatal (60%) and maternal (58%) deaths estimated in 2015. Sixty-seven countries need to at least double current progress in reducing stillbirths, many of these in Africa. The highest stillbirth rates (SBR) are in conflict and emergency areas. Over 60% of stillbirths are in rural areas, affecting the poorest families. However, even in the 92 countries with a SBR less than 12 per 1000 marked disparities remain between and within countries. When and where in the health system to focus? Each year there are an estimated 1.3 million intrapartum stillbirths (deaths during labour), despite two-thirds of births worldwide now being in health facilities. High coverage of good quality care during labour and birth is key, and would also reduce maternal and neonatal deaths, prevent disability and improve child development, giving a high return on investment. Improved quality antenatal care is also important to maximise maternal and fetal well-being, to detect and manage underlying conditions, and to promote healthy behaviours and birth planning. Which conditions to focus on? There is a myth that most stillbirths are inevitable due to non-preventable congenital abnormalities, yet for countries with reliable data congenital abnormalities account for a median of only 7.4% of stillbirths. Conditions where population attributable fraction (PAF) could be estimated at global level include: maternal age>35yrs (PAF 6.7%), maternal infections (PAF malaria 8.2%, syphilis 7.7%), non-communicable diseases, nutrition and lifestyle factors, many of which co-exist (PAF each around 10%) and prolonged pregnancy (PAF 14.2%). Stillbirths commonly occur via fetal growth restriction and/or preterm labour. Which data are required for action? Two-thirds of the world's newborns have birth certificate, but death registration coverage is even lower at <5% of neonatal deaths and even fewer stillbirths. Recording and registering all facility births, stillbirths, neonatal deaths, and maternal deaths would substantially increase data availability. Reliable measurement of stillbirths outside facilities using household surveys remains problematic, yet no research is addressing this issue. Little has been invested in improving coverage data for maternal and newborn health interventions including those specific to stillbirths. The ENAP measurement improvement roadmap, includes coverage indicator validation, and development of tools such as a minimum perinatal dataset and perinatal audit, offering opportunities to improve data availability and use.
Journal of the Turkish-German Gynecological Association
Introduction The World Health Organization (WHO) defines stillbirth as the delivery of a fetus after 22 completed weeks of gestation, weighing 500 grams or more, with the newborn showing no signs of life at delivery (1). According to the WHO, there were 2.6 million stillbirths in 2015. One out of every 45 babies was stillborn. Nearly three-quarters of them were from South Asia and sub Saharan Africa. The stillbirth rate in India was 23/1000 births in 2015, compared to a worldwide rate of 18.4/1000 births (2). Since then, the stillbirth rate in our country has declined by 10%, with an annual reduction rate of 2% between 2000-2015. This decline, however, is slow in comparison to the annual reduction in maternal mortality rate and under 5 infant mortality rate at 3% and 3.9%, respectively, during the same period (2). The WHO targets reducing the stillbirth rate to 12/1000 by 2030 by adopting the "Every newborn action plan" (2).
Stillbirth 2010–2018: a prospective, population-based, multi-country study from the Global Network
Reproductive Health, 2020
Background Stillbirth rates are high and represent a substantial proportion of the under-5 mortality in low and middle-income countries (LMIC). In LMIC, where nearly 98% of stillbirths worldwide occur, few population-based studies have documented cause of stillbirths or the trends in rate of stillbirth over time. Methods We undertook a prospective, population-based multi-country research study of all pregnant women in defined geographic areas across 7 sites in low-resource settings (Kenya, Zambia, Democratic Republic of Congo, India, Pakistan, and Guatemala). Staff collected demographic and health care characteristics with outcomes obtained at delivery. Cause of stillbirth was assigned by algorithm. Results From 2010 through 2018, 573,148 women were enrolled with delivery data obtained. Of the 552,547 births that reached 500 g or 20 weeks gestation, 15,604 were stillbirths; a rate of 28.2 stillbirths per 1000 births. The stillbirth rates were 19.3 in the Guatemala site, 23.8 in the ...
Stillbirths including intrapartum timing: EN-BIRTH multi-country validation study
BMC Pregnancy and Childbirth
Background An estimated >2 million babies stillborn around the world each year lack visibility. Low- and middle-income countries carry 84% of the burden yet have the least data. Most births are now in facilities, hence routine register-recording presents an opportunity to improve counting of stillbirths, but research is limited, particularly regarding accuracy. This paper evaluates register-recorded measurement of hospital stillbirths, classification accuracy, and barriers and enablers to routine recording. Methods The EN-BIRTH mixed-methods, observational study took place in five hospitals in Bangladesh, Nepal and Tanzania (2017–2018). Clinical observers collected time-stamped data on perinatal care and birth outcomes as gold standard. To assess accuracy of routine register-recorded stillbirth rates, we compared birth outcomes recorded in labour ward registers to observation data. We calculated absolute rate differences and individual-level validation metrics (sensitivity, speci...
Stillbirths including intrapartum timing: EN-BIRTH multi-country study
2020
Background: An estimated 2 million babies stillborn around the world each year lack visibility. Lowand middleincome countries carry 98% of the burden yet have the least data. Most births are now in facilities, hence routine register-recording presents an opportunity to improve counting of stillbirth, but research is limited, particularly regarding accuracy. This paper evaluates register-recorded measurement of hospital stillbirths, classification accuracy, and barriers and enablers to routine recording. Methods: The EN-BIRTH mixed-methods, observational study took place in five hospitals in Bangladesh, Nepal and Tanzania (2017–2018). Clinical observers collected time-stamped data on perinatal care and birth outcomes as gold standard. To assess accuracy of routine register-recorded stillbirth rates, we compared birth outcomes recorded in labour ward registers to observation data. We calculated absolute rate differences and individual-level validation metrics (sensitivity, specificity...