Publications by authors named "Hannah Blencowe"

109 Publications

Study protocol for WHO and UNICEF estimates of global, regional, and national preterm birth rates for 2010 to 2019.

PLoS One 2021 20;16(10):e0258751. Epub 2021 Oct 20.

Department of Maternal, Newborn, Child and Adolescent Health and Ageing, World Health Organization, Geneva, Switzerland.

Background: Preterm birth is a leading cause of death among children under five years. Previous estimates indicated global preterm birth rate of 10.6% (14.8 million neonates) in 2014. We aim to update preterm birth estimates at global, regional, and national levels for the period 2010 to 2019.

Methods: Preterm birth is defined as a live birth occurring before 37 completed gestational weeks, or <259 days since a woman's last menstrual period. National administrative data sources for WHO Member States with facility birth rates of ≥80% in the most recent year for which data is available will be searched. Administrative data identified for these countries will be considered if ≥80% of UN estimated live births include gestational age information to define preterm birth. For countries without eligible administrative data, a systematic review of studies will be conducted. Research studies will be eligible if the reported outcome is derived from an observational or intervention study conducted at national or sub-national level in population- or facility-based settings. Risk of bias assessments will focus on gestational age measurement method and coverage, and inclusion of special subgroups in published estimates. Covariates for inclusion will be selected a priori based on a conceptual framework of plausible associations with preterm birth, data availability, and quality of covariate data across many countries and years. Global, regional and national preterm birth rates will be estimated using a Bayesian multilevel-mixed regression model.

Discussion: Accurate measurement of preterm birth is challenging in many countries given incomplete or unavailable data from national administrative sources, compounded by limited gestational age assessment during pregnancy to define preterm birth. Up-to-date modelled estimates will be an important resource to measure the global burden of preterm birth and to inform policies and programs especially in settings with a high burden of neonatal mortality.

Trial Registration: PROSPERO registration: CRD42021237861.
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http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0258751PLOS
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8528299PMC
October 2021

Global, regional, and national estimates and trends in stillbirths from 2000 to 2019: a systematic assessment.

Lancet 2021 08;398(10302):772-785

Department of Biostatistics and Epidemiology, University of Massachusetts Amherst, Amherst, MA, USA.

Background: Stillbirths are a major public health issue and a sensitive marker of the quality of care around pregnancy and birth. The UN Global Strategy for Women's, Children's and Adolescents' Health (2016-30) and the Every Newborn Action Plan (led by UNICEF and WHO) call for an end to preventable stillbirths. A first step to prevent stillbirths is obtaining standardised measurement of stillbirth rates across countries. We estimated stillbirth rates and their trends for 195 countries from 2000 to 2019 and assessed progress over time.

Methods: For a systematic assessment, we created a dataset of 2833 country-year datapoints from 171 countries relevant to stillbirth rates, including data from registration and health information systems, household-based surveys, and population-based studies. After data quality assessment and exclusions, we used 1531 datapoints to estimate country-specific stillbirth rates for 195 countries from 2000 to 2019 using a Bayesian hierarchical temporal sparse regression model, according to a definition of stillbirth of at least 28 weeks' gestational age. Our model combined covariates with a temporal smoothing process such that estimates were informed by data for country-periods with high quality data, while being based on covariates for country-periods with little or no data on stillbirth rates. Bias and additional uncertainty associated with observations based on alternative stillbirth definitions and source types, and observations that were subject to non-sampling errors, were included in the model. We compared the estimated stillbirth rates and trends to previously reported mortality estimates in children younger than 5 years.

Findings: Globally in 2019, an estimated 2·0 million babies (90% uncertainty interval [UI] 1·9-2·2) were stillborn at 28 weeks or more of gestation, with a global stillbirth rate of 13·9 stillbirths (90% UI 13·5-15·4) per 1000 total births. Stillbirth rates in 2019 varied widely across regions, from 22·8 stillbirths (19·8-27·7) per 1000 total births in west and central Africa to 2·9 (2·7-3·0) in western Europe. After west and central Africa, eastern and southern Africa and south Asia had the second and third highest stillbirth rates in 2019. The global annual rate of reduction in stillbirth rate was estimated at 2·3% (90% UI 1·7-2·7) from 2000 to 2019, which was lower than the 2·9% (2·5-3·2) annual rate of reduction in neonatal mortality rate (for neonates aged <28 days) and the 4·3% (3·8-4·7) annual rate of reduction in mortality rate among children aged 1-59 months during the same period. Based on the lower bound of the 90% UIs, 114 countries had an estimated decrease in stillbirth rate since 2000, with four countries having a decrease of at least 50·0%, 28 having a decrease of 25·0-49·9%, 50 having a decrease of 10·0-24·9%, and 32 having a decrease of less than 10·0%. For the remaining 81 countries, we found no decrease in stillbirth rate since 2000. Of these countries, 34 were in sub-Saharan Africa, 16 were in east Asia and the Pacific, and 15 were in Latin America and the Caribbean.

Interpretation: Progress in reducing the rate of stillbirths has been slow compared with decreases in the mortality rate of children younger than 5 years. Accelerated improvements are most needed in the regions and countries with high stillbirth rates, particularly in sub-Saharan Africa. Future prevention of stillbirths needs increased efforts to raise public awareness, improve data collection, assess progress, and understand public health priorities locally, all of which require investment.

Funding: Bill & Melinda Gates Foundation and the UK Foreign, Commonwealth and Development Office.
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http://dx.doi.org/10.1016/S0140-6736(21)01112-0DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC8417352PMC
August 2021

Birthweight measurement processes and perceived value: qualitative research in one EN-BIRTH study hospital in Tanzania.

BMC Pregnancy Childbirth 2021 Mar 26;21(Suppl 1):232. Epub 2021 Mar 26.

Centre for Maternal, Adolescent, Reproductive, & Child Health (MARCH), London School of Hygiene and Tropical Medicine (LSHTM), London, UK.

Background: Globally an estimated 20.5 million liveborn babies are low birthweight (LBW) each year, weighing less than 2500 g. LBW babies have increased risk of mortality even beyond the neonatal period, with an ongoing risk of stunting and non-communicable diseases. LBW is a priority global health indicator. Now almost 80% of births are in facilities, yet birthweight data are lacking in most high-mortality burden countries and are of poor quality, notably with heaping especially on values ending in 00. We aimed to undertake qualitative research in a regional hospital in Dar es Salaam, Tanzania, observing birthweight weighing scales, exploring barriers and enablers to weighing at birth as well as perceived value of birthweight data to health workers, women and stakeholders.

Methods: Observations were undertaken on type of birthweight scale availability in hospital wards. In-depth semi-structured interviews (n = 21) were conducted with three groups: women in postnatal and kangaroo mother care wards, health workers involved in birthweight measurement and recording, and stakeholders involved in data aggregation in Temeke Hospital, Tanzania, a site in the EN-BIRTH study. An inductive thematic analysis was undertaken of translated interview transcripts.

Results: Of five wards that were expected to have scales, three had functional scales, and only one of the functional scales was digital. The labour ward weighed the most newborns using an analogue scale that was not consistently zeroed. Hospital birthweight data were aggregated monthly for reporting into the health management information system. Birthweight measurement was highly valued by all respondents, notably families and healthcare workers, and local use of data was considered an enabler. Perceived barriers to high quality birthweight data included: gaps in availability of precise weighing devices, adequate health workers and imprecise measurement practices.

Conclusion: Birthweight measurement is valued by families and health workers. There are opportunities to close the gap between the percentage of babies born in facilities and the percentage accurately weighed at birth by providing accurate scales, improving skills training and increasing local use of data. More accurate birthweight data are vitally important for all babies and specifically to track progress in preventing and improving immediate and long-term care for low birthweight children.
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http://dx.doi.org/10.1186/s12884-020-03356-2DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7995566PMC
March 2021

Survey of women's report for 33 maternal and newborn indicators: EN-BIRTH multi-country validation study.

BMC Pregnancy Childbirth 2021 Mar 26;21(Suppl 1):238. Epub 2021 Mar 26.

Centre for Maternal, Adolescent, Reproductive & Child Health (MARCH), London School of Hygiene & Tropical Medicine, London, UK.

Background: Population-based household surveys, notably the Demographic and Health Surveys (DHS) and Multiple Indicator Cluster Surveys (MICS), remain the main source of maternal and newborn health data for many low- and middle-income countries. As part of the Every Newborn Birth Indicators Research Tracking in Hospitals (EN-BIRTH) study, this paper focuses on testing validity of measurement of maternal and newborn indicators around the time of birth (intrapartum and postnatal) in survey-report.

Methods: EN-BIRTH was an observational study testing the validity of measurement for selected maternal and newborn indicators in five secondary/tertiary hospitals in Bangladesh, Nepal and Tanzania, conducted from July 2017 to July 2018. We compared women's report at exit survey with the gold standard of direct observation or verification from clinical records for women with vaginal births. Population-level validity was assessed by validity ratios (survey-reported coverage: observer-assessed coverage). Individual-level accuracy was assessed by sensitivity, specificity and percent agreement. We tested indicators already in DHS/MICS as well as indicators with potential to be included in population-based surveys, notably the first validation for small and sick newborn care indicators.

Results: 33 maternal and newborn indicators were evaluated. Amongst nine indicators already present in DHS/MICS, validity ratios for baby dried or wiped, birthweight measured, low birthweight, and sex of baby (female) were between 0.90-1.10. Instrumental birth, skin-to-skin contact, and early initiation of breastfeeding were highly overestimated by survey-report (2.04-4.83) while umbilical cord care indicators were massively underestimated (0.14-0.22). Amongst 24 indicators not currently in DHS/MICS, two newborn contact indicators (kangaroo mother care 1.00, admission to neonatal unit 1.01) had high survey-reported coverage amongst admitted newborns and high sensitivity. The remaining indicators did not perform well and some had very high "don't know" responses.

Conclusions: Our study revealed low validity for collecting many maternal and newborn indicators through an exit survey instrument, even with short recall periods among women with vaginal births. Household surveys are already at risk of overload, and some specific clinical care indicators do not perform well and may be under-powered. Given that approximately 80% of births worldwide occur in facilities, routine registers should also be explored to track coverage of key maternal and newborn health interventions, particularly for clinical care.
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http://dx.doi.org/10.1186/s12884-020-03425-6DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7995710PMC
March 2021

Stillbirths including intrapartum timing: EN-BIRTH multi-country validation study.

BMC Pregnancy Childbirth 2021 Mar 26;21(Suppl 1):226. Epub 2021 Mar 26.

Maternal, Adolescent, Reproductive & Child Health (MARCH) Centre, London School of Hygiene & Tropical Medicine, Keppel Street, London, WC1E 7HT, UK.

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, specificity, percent agreement). We assessed misclassification of stillbirths with neonatal deaths. To examine stillbirth appearance (fresh/macerated) as a proxy for timing of death, we compared appearance to observed timing of intrauterine death based on heart rate at admission.

Results: 23,072 births were observed including 550 stillbirths. Register-recorded completeness of birth outcomes was > 90%. The observed study stillbirth rate ranged from 3.8 (95%CI = 2.0,7.0) to 50.3 (95%CI = 43.6,58.0)/1000 total births and was under-estimated in routine registers by 1.1 to 7.3 /1000 total births (register: observed ratio 0.9-0.7). Specificity of register-recorded birth outcomes was > 99% and sensitivity varied between hospitals, ranging from 77.7-86.1%. Percent agreement between observer-assessed birth outcome and register-recorded birth outcome was very high across all hospitals and all modes of birth (> 98%). Fresh or macerated stillbirth appearance was a poor proxy for timing of stillbirth. While there were similar numbers of stillbirths misclassified as neonatal deaths (17/430) and neonatal deaths misclassified as stillbirths (21/36), neonatal deaths were proportionately more likely to be misclassified as stillbirths (58.3% vs 4.0%). Enablers to more accurate register-recording of birth outcome included supervision and data use.

Conclusions: Our results show these routine registers accurately recorded stillbirths. Fresh/macerated appearance was a poor proxy for intrapartum stillbirths, hence more focus on measuring fetal heart rate is crucial to classification and importantly reduction in these preventable deaths.
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http://dx.doi.org/10.1186/s12884-020-03238-7DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7995570PMC
March 2021

Birthweight: EN-BIRTH multi-country validation study.

BMC Pregnancy Childbirth 2021 Mar 26;21(Suppl 1):240. Epub 2021 Mar 26.

Centre for Maternal, Adolescent, Reproductive & Child Health (MARCH), London School of Hygiene & Tropical Medicine (LSHTM), London, UK.

Background: Accurate birthweight is critical to inform clinical care at the individual level and tracking progress towards national/global targets at the population level. Low birthweight (LBW) < 2500 g affects over 20.5 million newborns annually. However, data are lacking and may be affected by heaping. This paper evaluates birthweight measurement within the Every Newborn Birth Indicators Research Tracking in Hospitals (EN-BIRTH) study.

Methods: The EN-BIRTH study took place in five hospitals in Bangladesh, Nepal and Tanzania (2017-2018). Clinical observers collected time-stamped data (gold standard) for weighing at birth. We compared accuracy for two data sources: routine hospital registers and women's report at exit interview survey. We calculated absolute differences and individual-level validation metrics. We analysed birthweight coverage and quality gaps including timing and heaping. Qualitative data explored barriers and enablers for routine register data recording.

Results: Among 23,471 observed births, 98.8% were weighed. Exit interview survey-reported weighing coverage was 94.3% (90.2-97.3%), sensitivity 95.0% (91.3-97.8%). Register-reported coverage was 96.6% (93.2-98.9%), sensitivity 97.1% (94.3-99%). Routine registers were complete (> 98% for four hospitals) and legible > 99.9%. Weighing of stillbirths varied by hospital, ranging from 12.5-89.0%. Observed LBW rate was 15.6%; survey-reported rate 14.3% (8.9-20.9%), sensitivity 82.9% (75.1-89.4%), specificity 96.1% (93.5-98.5%); register-recorded rate 14.9%, sensitivity 90.8% (85.9-94.8%), specificity 98.5% (98-99.0%). In surveys, "don't know" responses for birthweight measured were 4.7%, and 2.9% for knowing the actual weight. 95.9% of observed babies were weighed within 1 h of birth, only 14.7% with a digital scale. Weight heaping indices were around two-fold lower using digital scales compared to analogue. Observed heaping was almost 5% higher for births during the night than day. Survey-report further increased observed birthweight heaping, especially for LBW babies. Enablers to register birthweight measurement in qualitative interviews included digital scale availability and adequate staffing.

Conclusions: Hospital registers captured birthweight and LBW prevalence more accurately than women's survey report. Even in large hospitals, digital scales were not always available and stillborn babies not always weighed. Birthweight data are being captured in hospitals and investment is required to further improve data quality, researching of data flow in routine systems and use of data at every level.
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http://dx.doi.org/10.1186/s12884-020-03355-3DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7995711PMC
March 2021

Parent mediated intervention programmes for children and adolescents with neurodevelopmental disorders in South Asia: A systematic review.

PLoS One 2021 11;16(3):e0247432. Epub 2021 Mar 11.

Initiative for Non-Communicable Diseases, Health Systems and Population Studies Division, International Centre for Diarrhoeal Disease Research, Bangladesh, Dhaka, Bangladesh.

Objective: Parent-mediated programmes have been found to be cost effective for addressing the needs of the children and adolescents with Neurodevelopmental Disorders (NDD) in high-income countries. We explored the impact of parent-mediated intervention programmes in South Asia, where the burden of NDD is high.

Methods: A systematic review was conducted using the following databases; PUBMED, MEDLINE, PsycINFO, Google Scholar and Web of Science. Predefined MeSH terms were used, and articles were included if published prior to January 2020. Two independent researchers screened the articles and reviewed data.

Outcomes Measures: The review included studies that targeted children and adolescents between 1 and 18 years of age diagnosed with any of four specific NDDs that are commonly reported in South Asia; Autism Spectrum Disorder (ASD), Intellectual Disability (ID), Attention Deficit Hyperactivity Disorder (ADHD) and Cerebral Palsy (CP). Studies that reported on parent or child outcomes, parent-child interaction, parent knowledge of NDDs, or child activities of daily living were included for full text review.

Results: A total of 1585 research articles were retrieved and 23 studies met inclusion criteria, including 9 Randomized Controlled Trials and 14 pre-post intervention studies. Of these, seventeen studies reported effectiveness, and six studies reported feasibility and acceptability of the parent-mediated interventions. Three studies demonstrated improved parent-child interaction, three studies demonstrated improved child communication initiations, five studies reported improved social and communication skills in children, four studies demonstrated improved parental knowledge about how to teach their children, and four studies reported improved motor and cognitive skills, social skills, language development, learning ability, or academic performance in children.

Conclusion: This systematic review of 23 studies demonstrated improvements in parent and child skills following parent-mediated intervention in South Asia. Additional evaluations of locally customized parent-mediated programmes are needed to support development of feasible interventions for South Asian countries.
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http://journals.plos.org/plosone/article?id=10.1371/journal.pone.0247432PLOS
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7951928PMC
August 2021

Stillbirth maternity care measurement and associated factors in population-based surveys: EN-INDEPTH study.

Popul Health Metr 2021 02 8;19(Suppl 1):11. Epub 2021 Feb 8.

Department of Health Policy, Planning and Management, Makerere University School of Public Health, Kampala, Uganda.

Background: Household 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.

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). 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.

Results: A 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.

Conclusions: Women 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.
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http://dx.doi.org/10.1186/s12963-020-00240-1DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7869205PMC
February 2021

Neonatal and child mortality data in retrospective population-based surveys compared with prospective demographic surveillance: EN-INDEPTH study.

Popul Health Metr 2021 02 8;19(Suppl 1). Epub 2021 Feb 8.

Bandim Health Project, Bissau, Guinea-Bissau.

Background: Global mortality estimates remain heavily dependent on household surveys in low- and middle-income countries, where most under-five deaths occur. Few studies have assessed the accuracy of mortality data or determinants of capturing births in surveys.

Methods: The Every Newborn-INDEPTH study (EN-INDEPTH) included a large, multi-country survey of women aged 15-49 interviewed about livebirths and their survival status in five Health and Demographic Surveillance Systems (HDSSs). The HDSSs undertake regular household visits to register births and deaths for a given population. We analysed EN-INDEPTH survey data to assess background factors associated with not recalling a complete date-of-birth. We calculated Kaplan-Meier survival estimates for both survey and HDSS data and describe age-at-death distributions during the past 5 years for children born to the same women. We assessed the proportion of HDSS-births that could be matched on month-of-birth to survey-births and used regression models to identify factors associated with matching.

Results: 69,176 women interviewed in the survey reported 109,817 births and 3064 deaths in children under 5 years in the 5 years prior to the survey. In the HDSS data, the same women had 83,768 registered births and 2335 under-five deaths in the same period. A complete date-of-birth was not reported for 1-7% of survey-births. Birthdates were less likely to be complete for dead children and children born to women of higher parity or with little/no education. Distributions of reported age-at-death indicated heaping at full weeks (neonatal period) and at 12 months. Heaping was more pronounced in the survey data. Survey estimates of under-five mortality rates were similar to HDSS estimates of under-five mortality in two of five sites, higher in the survey in two sites (15%, 41%) and lower (24%) in one site. The proportion of HDSS-births matched to survey-births ranged from 51 to 89% across HDSSs and births of children who had died were less likely to be matched.

Conclusions: Mortality estimates in the survey and HDSS were not markedly different for most sites. However, neither source is a "gold standard" and both sources miss some events. Research is required to improve capture and accuracy to better track newborn and child survival targets.
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http://dx.doi.org/10.1186/s12963-020-00232-1DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7869220PMC
February 2021

Termination of pregnancy data completeness and feasibility in population-based surveys: EN-INDEPTH study.

Popul Health Metr 2021 02 8;19(Suppl 1):12. Epub 2021 Feb 8.

Maternal, Adolescent, Reproductive & Child Health (MARCH) Centre, London Sch. of Hygiene & Tropical Medicine, London, UK.

Background: Termination of pregnancy (TOP) is a common cause of maternal morbidity and mortality in low- and middle-income countries. Population-based surveys are the major data source for TOP data in LMICs but are known to have shortcomings that require improving. The EN-INDEPTH multi-country survey employed a full pregnancy history approach with roster and new questions on TOP and Menstrual Restoration. This mixed methods paper assesses the completeness of responses to questions eliciting TOP information from respondents and reports on practices, barriers, and facilitators to TOP reporting.

Methods: The EN-INDEPTH study was a population-based cross-sectional study. The Full Pregnancy History arm of the study surveyed 34,371 women of reproductive age between 2017 and 2018 in five Health and Demographic Surveillance System (HDSS) sites of the INDEPTH network: Bandim, Guinea-Bissau; Dabat, Ethiopia; IgangaMayuge, Uganda; Kintampo, Ghana; and Matlab, Bangladesh. Completeness and time spent in answering TOP questions were evaluated using simple tabulations and summary statistics. Exact binomial 95% confidence intervals were computed for TOP rates and ratios. Twenty-eight (28) focus group discussions were undertaken and analysed thematically.

Results: Completeness of responses regarding TOP was between 90.3 and 100.0% for all question types. The new questions elicited between 2.0% (1.0-3.4), 15.5% (13.9-17.3), and 11.5% (8.8-14.7) lifetime TOP cases over the roster questions from Dabat, Ethiopia; Matlab, Bangladesh; and Kintampo, Ghana, respectively. The median response time on the roster TOP questions was below 1.3 minutes in all sites. Qualitative results revealed that TOP was frequently stigmatised and perceived as immoral, inhumane, and shameful. Hence, it was kept secret rendering it difficult and uncomfortable to report. Miscarriages were perceived to be natural, being easier to report than TOP. Interviewer techniques, which were perceived to facilitate TOP disclosure, included cultural competence, knowledge of contextually appropriate terms for TOP, adaptation to interviewee's individual circumstances, being non-judgmental, speaking a common language, and providing detailed informed consent.

Conclusions: Survey roster questions may under-represent true TOP rates, since the new questions elicited responses from women who had not disclosed TOP in the roster questions. Further research is recommended particularly into standardised training and approaches to improving interview context and techniques to facilitate TOP reporting in surveys.
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http://dx.doi.org/10.1186/s12963-020-00238-9DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7869447PMC
February 2021

Gestational age data completeness, quality and validity in population-based surveys: EN-INDEPTH study.

Popul Health Metr 2021 02 8;19(Suppl 1):16. Epub 2021 Feb 8.

Maternal, Adolescent, Reproductive & Child Health (MARCH) Centre, London School of Hygiene & Tropical Medicine, London, UK.

Background: Preterm 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.

Methods: The 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).

Results: GAm 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.

Conclusions: This 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.
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http://dx.doi.org/10.1186/s12963-020-00230-3DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7869446PMC
February 2021

Count Every Newborn: EN-INDEPTH study to improve pregnancy outcome measurement in population-based surveys.

Popul Health Metr 2021 02 8;19(Suppl 1). Epub 2021 Feb 8.

Maternal, Adolescent, Reproductive & Child Health (MARCH) Centre, London School of Hygiene & Tropical Medicine, London, UK.

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http://dx.doi.org/10.1186/s12963-020-00243-yDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7868673PMC
February 2021

Birth, stillbirth and death registration data completeness, quality and utility in population-based surveys: EN-INDEPTH study.

Popul Health Metr 2021 02 8;19(Suppl 1):14. Epub 2021 Feb 8.

IgangaMayuge Health and Demographic Surveillance System, Makerere University Centre for Health and Population Research, Iganga, Uganda.

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 < 1 min. Reported completeness of birth registration was 30.7% (6.1-53.5%) for babies surviving the neonatal period, compared to 1.7% for neonatal deaths (0.4-5.7%). Women were able to report age at birth registration for 93.6% of babies. Non-registration of babies surviving the neonatal period was significantly higher for home-born children (aOR 1.43 (95% CI 1.27-1.60)) and in Dabat (Ethiopia) (aOR 4.11 (95% CI 3.37-5.01)). Other socio-demographic factors associated with non-registration included younger age of mother, more prior births, little or no education, and lower socio-economic status. Neonatal death registration questions were feasible (100% women responded; only 1% did not know), revealing extremely low completeness with only 1.2% of neonatal deaths reported as registered. Despite > 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.
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http://dx.doi.org/10.1186/s12963-020-00231-2DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7869445PMC
February 2021

Birthweight data completeness and quality in population-based surveys: EN-INDEPTH study.

Popul Health Metr 2021 02 8;19(Suppl 1):17. Epub 2021 Feb 8.

Maternal, Adolescent, Reproductive & Child Health (MARCH) Centre, London School of Hygiene & Tropical Medicine, London, UK.

Background: Low 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.

Methods: The 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.

Results: Almost 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.

Conclusions: Substantial 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.
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http://dx.doi.org/10.1186/s12963-020-00229-wDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7869202PMC
February 2021

Barriers and enablers to reporting pregnancy and adverse pregnancy outcomes in population-based surveys: EN-INDEPTH study.

Popul Health Metr 2021 02 8;19(Suppl 1):15. Epub 2021 Feb 8.

Maternal, Adolescent, Reproductive & Child Health (MARCH) Centre, London School of Hygiene & Tropical Medicine, London, UK.

Background: Risks of neonatal death, stillbirth and miscarriage are highest in low- and middle-income countries (LMICs), where data has most gaps and estimates rely on household surveys, dependent on women reporting these events. Underreporting of pregnancy and adverse pregnancy outcomes (APOs) is common, but few studies have investigated barriers to reporting these in LMICs. The EN-INDEPTH multi-country study applied qualitative approaches to explore barriers and enablers to reporting pregnancy and APOs in surveys, including individual, community, cultural and interview level factors.

Methods: The study was conducted in five Health and Demographic Surveillance System sites in Guinea-Bissau, Ethiopia, Uganda, Bangladesh and Ghana. Using an interpretative paradigm and phenomenology methodology, 28 focus group discussions were conducted with 82 EN-INDEPTH survey interviewers and supervisors and 172 women between February and August 2018. Thematic analysis was guided by an a priori codebook.

Results: Survey interview processes influenced reporting of pregnancy and APOs. Women found questions about APOs intrusive and of unclear relevance. Across all sites, sociocultural and spiritual beliefs were major barriers to women reporting pregnancy, due to fear that harm would come to their baby. We identified several factors affecting reporting of APOs including reluctance to speak about sad memories and variation in recognition of the baby's value, especially for APOs at earlier gestation. Overlaps in local understanding and terminology for APOs may also contribute to misreporting, for example between miscarriages and stillbirths. Interviewers' skills and training were the keys to enabling respondents to open up, as was privacy during interviews.

Conclusion: Sociocultural beliefs and psycho-social impacts of APOs play a large part in underreporting these events. Interviewers' skills, careful tool development and translation are the keys to obtaining accurate information. Reporting could be improved with clearer explanations of survey purpose and benefits to respondents and enhanced interviewer training on probing, building rapport and empathy.
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http://dx.doi.org/10.1186/s12963-020-00228-xDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7869448PMC
February 2021

Electronic data collection in a multi-site population-based survey: EN-INDEPTH study.

Popul Health Metr 2021 02 8;19(Suppl 1). Epub 2021 Feb 8.

Maternal, Adolescent, Reproductive & Child Health (MARCH) Centre, London School of Hygiene & Tropical Medicine, London, UK.

Background: Electronic data collection is increasingly used for household surveys, but factors influencing design and implementation have not been widely studied. The Every Newborn-INDEPTH (EN-INDEPTH) study was a multi-site survey using electronic data collection in five INDEPTH health and demographic surveillance system sites.

Methods: We described experiences and learning involved in the design and implementation of the EN-INDEPTH survey, and undertook six focus group discussions with field and research team to explore their experiences. Thematic analyses were conducted in NVivo12 using an iterative process guided by a priori themes.

Results: Five steps of the process of selecting, adapting and implementing electronic data collection in the EN-INDEPTH study are described. Firstly, we reviewed possible electronic data collection platforms, and selected the World Bank's Survey Solutions® as the most suited for the EN-INDEPTH study. Secondly, the survey questionnaire was coded and translated into local languages, and further context-specific adaptations were made. Thirdly, data collectors were selected and trained using standardised manual. Training varied between 4.5 and 10 days. Fourthly, instruments were piloted in the field and the questionnaires finalised. During data collection, data collectors appreciated the built-in skip patterns and error messages. Internet connection unreliability was a challenge, especially for data synchronisation. For the fifth and final step, data management and analyses, it was considered that data quality was higher and less time was spent on data cleaning. The possibility to use paradata to analyse survey timing and corrections was valued. Synchronisation and data transfer should be given special consideration.

Conclusion: We synthesised experiences using electronic data collection in a multi-site household survey, including perceived advantages and challenges. Our recommendations for others considering electronic data collection include ensuring adaptations of tools to local context, piloting/refining the questionnaire in one site first, buying power banks to mitigate against power interruption and paying attention to issues such as GPS tracking and synchronisation, particularly in settings with poor internet connectivity.
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http://dx.doi.org/10.1186/s12963-020-00226-zDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7869201PMC
February 2021

Paradata analyses to inform population-based survey capture of pregnancy outcomes: EN-INDEPTH study.

Popul Health Metr 2021 02 8;19(Suppl 1):10. Epub 2021 Feb 8.

Maternal, Adolescent, Reproductive & Child Health (MARCH) Centre, London School of Hygiene & Tropical Medicine, London, UK.

Background: Paradata are (timestamped) records tracking the process of (electronic) data collection. We analysed paradata from a large household survey of questions capturing pregnancy outcomes to assess performance (timing and correction processes). We examined how paradata can be used to inform and improve questionnaire design and survey implementation in nationally representative household surveys, the major source for maternal and newborn health data worldwide.

Methods: The EN-INDEPTH cross-sectional population-based survey of women of reproductive age in five Health and Demographic Surveillance System sites (in Bangladesh, Guinea-Bissau, Ethiopia, Ghana, and Uganda) randomly compared two modules to capture pregnancy outcomes: full pregnancy history (FPH) and the standard DHS-7 full birth history (FBH+). We used paradata related to answers recorded on tablets using the Survey Solutions platform. We evaluated the difference in paradata entries between the two reproductive modules and assessed which question characteristics (type, nature, structure) affect answer correction rates, using regression analyses. We also proposed and tested a new classification of answer correction types.

Results: We analysed 3.6 million timestamped entries from 65,768 interviews. 83.7% of all interviews had at least one corrected answer to a question. Of 3.3 million analysed questions, 7.5% had at least one correction. Among corrected questions, the median number of corrections was one, regardless of question characteristics. We classified answer corrections into eight types (no correction, impulsive, flat (simple), zigzag, flat zigzag, missing after correction, missing after flat (zigzag) correction, missing/incomplete). 84.6% of all corrections were judged not to be problematic with a flat (simple) mistake correction. Question characteristics were important predictors of probability to make answer corrections, even after adjusting for respondent's characteristics and location, with interviewer clustering accounted as a fixed effect. Answer correction patterns and types were similar between FPH and FBH+, as well as the overall response duration. Avoiding corrections has the potential to reduce interview duration and reproductive module completion by 0.4 min.

Conclusions: The use of questionnaire paradata has the potential to improve measurement and the resultant quality of electronic data. Identifying sections or specific questions with multiple corrections sheds light on typically hidden challenges in the survey's content, process, and administration, allowing for earlier real-time intervention (e.g.,, questionnaire content revision or additional staff training). Given the size and complexity of paradata, additional time, data management, and programming skills are required to realise its potential.
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http://dx.doi.org/10.1186/s12963-020-00241-0DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7869213PMC
February 2021

Pregnancy intention data completeness, quality and utility in population-based surveys: EN-INDEPTH study.

Popul Health Metr 2021 02 8;19(Suppl 1). Epub 2021 Feb 8.

Maternal, Adolescent, Reproductive & Child Health (MARCH) Centre, London School of Hygiene & Tropical Medicine, London, UK.

Background: An 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.

Methods: The 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.

Results: Missing 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.

Conclusions: We 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.
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http://dx.doi.org/10.1186/s12963-020-00227-yDOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7869206PMC
February 2021

Four decades of measuring stillbirths and neonatal deaths in Demographic and Health Surveys: historical review.

Popul Health Metr 2021 02 8;19(Suppl 1). Epub 2021 Feb 8.

Maternal, Adolescent, Reproductive & Child Health (MARCH) Centre, London School of Hygiene & Tropical Medicine, London, UK.

Background: 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.

Methods: 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 (ENMR) to NMR, comparing by country, over time and by DHS module.

Results: DHS has conducted >320 surveys in 90 countries since 1984. Two types of maternity history have been used: full birth history (FBH) and full pregnancy history (FPH). A FBH collecting information only on live births has been included in all model questionnaires to date, with data on stillbirths collected through a reproductive calendar (DHS II-VI) or using additional questions on non-live births (DHS-VII). FPH collecting information on all pregnancies including live births, miscarriages, abortions and stillbirths has been used in 17 countries. We found no evidence of variation in stillbirth data quality assessed by SBR:NMR over time for FBH surveys with reproductive calendar, some variation for surveys with FBH in DHS-VII and most variation among the surveys conducted with a FPH. ENMR:NMR ratio increased over time, which may reflect changes in data quality or real epidemiological change.

Conclusion: DHS remains the major data source for pregnancy outcomes worldwide. Although the DHS model questionnaire has evolved over the last three and half decades, more robust evidence is required concerning optimal methods to obtain accurate data on stillbirths and neonatal deaths through household surveys and also to develop and test standardised data quality criteria.
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http://dx.doi.org/10.1186/s12963-020-00225-0DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7869207PMC
February 2021

Stillbirth outcome capture and classification in population-based surveys: EN-INDEPTH study.

Popul Health Metr 2021 02 8;19(Suppl 1):13. Epub 2021 Feb 8.

Maternal, Adolescent, Reproductive & Child Health (MARCH) Centre, London School of Hygiene & Tropical Medicine, London, UK.

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 reporting birthweight for stillbirths were conducted. Thematic analysis was guided by an a priori codebook.

Results: Overall 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.

Conclusions: Improving 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.
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http://dx.doi.org/10.1186/s12963-020-00239-8DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7869203PMC
February 2021

Stillbirth in Australia 1: The road to now: Two decades of stillbirth research and advocacy in Australia.

Women Birth 2020 Nov;33(6):506-513

NHMRC Centre of Research Excellence in Stillbirth, Mater Research Institute - The University of Queensland (MRI-UQ), South Brisbane, Australia; International Stillbirth Alliance, Australia; Griffith University and Gold Coast University Hospital, Gold Coast, Australia.

Stillbirth is a major public health problem with an enormous mortality burden and psychosocial impact on parents, families and the wider community both globally and in Australia. In 2015, Australia's late gestation stillbirth rate was over 30% higher than that of the best-performing countries globally, highlighting the urgent need for action. We present an overview of the foundations which led to the establishment of Australia's NHMRC Centre of Research Excellence in Stillbirth (Stillbirth CRE) in 2017 and highlight key activities in the following areas: Opportunities to expand and improve collaborations between research teams; Supporting the conduct and development of innovative, high quality, collaborative research that incorporates a strong parent voice; Promoting effective translation of research into health policy and/or practice; and the Regional and global work of the Stillbirth CRE. We highlight the first-ever Senate Inquiry into Stillbirth in Australia in 2018. These events ultimately led to the development of a National Stillbirth Action and Implementation Plan for Australia with the aims of reducing stillbirth rates by 20% over the next five years, reducing the disparity in stillbirth rates between advantaged and disadvantaged communities, and improving care for all families who experience this loss.
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http://dx.doi.org/10.1016/j.wombi.2020.09.005DOI Listing
November 2020

Labour and delivery ward register data availability, quality, and utility - Every Newborn - birth indicators research tracking in hospitals (EN-BIRTH) study baseline analysis in three countries.

BMC Health Serv Res 2020 Aug 12;20(1):737. Epub 2020 Aug 12.

Department of Health Systems, Impact Evaluation and Policy, Ifakara Health Institute, Dar es Salaam, Tanzania.

Background: Countries with the highest burden of maternal and newborn deaths and stillbirths often have little information on these deaths. Since over 81% of births worldwide now occur in facilities, using routine facility data could reduce this data gap. We assessed the availability, quality, and utility of routine labour and delivery ward register data in five hospitals in Bangladesh, Nepal, and Tanzania. This paper forms the baseline register assessment for the Every Newborn-Birth Indicators Research Tracking in Hospitals (EN-BIRTH) study.

Methods: We extracted 21 data elements from routine hospital labour ward registers, useful to calculate selected maternal and newborn health (MNH) indicators. The study sites were five public hospitals during a one-year period (2016-17). We measured 1) availability: completeness of data elements by register design, 2) data quality: implausibility, internal consistency, and heaping of birthweight and explored 3) utility by calculating selected MNH indicators using the available data.

Results: Data were extracted for 20,075 births. Register design was different between the five hospitals with 10-17 of the 21 selected MNH data elements available. More data were available for health outcomes than interventions. Nearly all available data elements were > 95% complete in four of the five hospitals and implausible values were rare. Data elements captured in specific columns were 85.2% highly complete compared to 25.0% captured in non-specific columns. Birthweight data were less complete for stillbirths than live births at two hospitals, and significant heaping was found in all sites, especially at 2500g and 3000g. All five hospitals recorded count data required to calculate impact indicators including; stillbirth rate, low birthweight rate, Caesarean section rate, and mortality rates.

Conclusions: Data needed to calculate MNH indicators are mostly available and highly complete in EN-BIRTH study hospital routine labour ward registers in Bangladesh, Nepal and Tanzania. Register designs need to include interventions for coverage measurement. There is potential to improve data quality if Health Management Information Systems utilization with feedback loops can be strengthened. Routine health facility data could contribute to reduce the coverage and impact data gap around the time of birth.
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http://dx.doi.org/10.1186/s12913-020-5028-7DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7422224PMC
August 2020

Impact of COVID-19 on maternal and child health.

Lancet Glob Health 2020 10 3;8(10):e1258. Epub 2020 Aug 3.

Centre for Maternal, Adolescent, Reproductive & Child Health, London School of Tropical Medicine and Hygiene, London, UK.

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http://dx.doi.org/10.1016/S2214-109X(20)30326-0DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7398669PMC
October 2020

Voices from the frontline: findings from a thematic analysis of a rapid online global survey of maternal and newborn health professionals facing the COVID-19 pandemic.

BMJ Glob Health 2020 Jun;5(6)

Department of Public Health, Institute of Tropical Medicine, Antwerpen, Belgium.

Introduction: The COVID-19 pandemic has substantially impacted maternity care provision worldwide. Studies based on modelling estimated large indirect effects of the pandemic on services and health outcomes. The objective of this study was to prospectively document experiences of frontline maternal and newborn healthcare providers.

Methods: We conducted a global, cross-sectional study of maternal and newborn health professionals via an online survey disseminated through professional networks and social media in 12 languages. Information was collected between 24 March and 10 April 2020 on respondents' background, preparedness for and response to COVID-19 and their experience during the pandemic. An optional module sought information on adaptations to 17 care processes. Descriptive statistics and qualitative thematic analysis were used to analyse responses, disaggregating by low-income and middle-income countries (LMICs) and high-income countries (HICs).

Results: We analysed responses from 714 maternal and newborn health professionals. Only one-third received training on COVID-19 from their health facility and nearly all searched for information themselves. Half of respondents in LMICs received updated guidelines for care provision compared with 82% in HICs. Overall, 47% of participants in LMICs and 69% in HICs felt mostly or completely knowledgeable in how to care for COVID-19 maternity patients. Facility-level responses to COVID-19 (signage, screening, testing and isolation rooms) were more common in HICs than LMICs. Globally, 90% of respondents reported somewhat or substantially higher levels of stress. There was a widespread perception of reduced use of routine maternity care services, and of modification in care processes, some of which were not evidence-based practices.

Conclusions: Substantial knowledge gaps exist in guidance on management of maternity cases with or without COVID-19. Formal information-sharing channels for providers must be established and mental health support provided. Surveys of maternity care providers can help track the situation, capture innovations and support rapid development of effective responses.
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http://dx.doi.org/10.1136/bmjgh-2020-002967DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7335688PMC
June 2020

The Fallacy of Using Administrative Data in Assessing the Effectiveness of Food Fortification. Comment on: "Folic Acid Fortification and Neural Tube Defect Risk: Analysis of the Food Fortification Initiative Dataset. 2020, , 247".

Nutrients 2020 May 8;12(5). Epub 2020 May 8.

Department of Epidemiology, Emory University Rollins School of Public Health, Atlanta, GA 30322, USA.

Our objective in this comment is to highlight several limitations in an ecological research study that was published in by Murphy and Westmark (2020) in January 2020. The study used data from the Food Fortification Initiative (FFI) website, and applying an ecological study design, made an error of "ecologic fallacy" in concluding that "national fortification with folic acid is not associated with a significant decrease in the prevalence of neural tube defects (NTDs) at the population level". We list study limitations that led to their erroneous conclusions, stemming from incorrect considerations regarding NTD prevalence, the average grain availability for a country, the fortification coverage in a country, the population reach of fortified foods within a country, and the absence of the consideration of fortification type (voluntary vs. mandatory), country-specific policies on elective terminations for NTD-affected pregnancies, stillbirth proportions among those with NTDs, and fortification implementation. FFI data are derived from many sources and intended for fortification advocacy, not for hypothesis testing. The flawed study by Murphy & Westmark (2020) in promotes a confusing and incorrect message to stakeholders, misguides policy makers, and hinders progress in global NTD prevention through a cost-effective, safe, and effective intervention: the mandatory large-scale folic acid fortification of staple foods.
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http://dx.doi.org/10.3390/nu12051352DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7284892PMC
May 2020

The PRECISE (PREgnancy Care Integrating translational Science, Everywhere) Network's first protocol: deep phenotyping in three sub-Saharan African countries.

Reprod Health 2020 Apr 30;17(Suppl 1):51. Epub 2020 Apr 30.

Department of Women and Children's Health, School of Life Course Science, Faculty of Life Sciences and Medicine, King's College London, 5th Floor, Becket House, 1 Lambeth Palace Road, London, SE1 7EU, UK.

Background: The PRECISE (PREgnancy Care Integrating translational Science, Everywhere) Network is a new and broadly-based group of research scientists and health advocates based in the UK, Africa and North America.

Methods: This paper describes the protocol that underpins the clinical research activity of the Network, so that the investigators, and broader global health community, can have access to 'deep phenotyping' (social determinants of health, demographic and clinical parameters, placental biology and agnostic discovery biology) of women as they advance through pregnancy to the end of the puerperium, whether those pregnancies have normal outcomes or are complicated by one/more of the placental disorders of pregnancy (pregnancy hypertension, fetal growth restriction and stillbirth). Our clinical sites are in The Gambia (Farafenni), Kenya (Kilifi County), and Mozambique (Maputo Province). In each country, 50 non-pregnant women of reproductive age will be recruited each month for 1 year, to provide a final national sample size of 600; these women will provide culturally-, ethnically-, seasonally- and spatially-relevant control data with which to compare women with normal and complicated pregnancies. Between the three countries we will recruit ≈10,000 unselected pregnant women over 2 years. An estimated 1500 women will experience one/more placental complications over the same epoch. Importantly, as we will have accurate gestational age dating using the TraCer device, we will be able to discriminate between fetal growth restriction and preterm birth. Recruitment and follow-up will be primarily facility-based and will include women booking for antenatal care, subsequent visits in the third trimester, at time-of-disease, when relevant, during/immediately after birth and 6 weeks after birth.

Conclusions: To accelerate progress towards the women's and children's health-relevant Sustainable Development Goals, we need to understand how a variety of social, chronic disease, biomarker and pregnancy-specific determinants health interact to result in either a resilient or a compromised pregnancy for either mother or fetus/newborn, or both. This protocol has been designed to create such a depth of understanding. We are seeking funding to maintain the cohort to better understand the implications of pregnancy complications for both maternal and child health.
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http://dx.doi.org/10.1186/s12978-020-0872-9DOI Listing
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC7191688PMC
April 2020

Randomised comparison of two household survey modules for measuring stillbirths and neonatal deaths in five countries: the Every Newborn-INDEPTH study.

Lancet Glob Health 2020 04;8(4):e555-e566

Health Systems and Population Studies Division, icddr,b, Dhaka, Bangladesh.

Background: An estimated 5·1 million stillbirths and neonatal deaths occur annually. Household surveys, most notably the Demographic and Health Survey (DHS), run in more than 90 countries and are the main data source from the highest burden regions, but data-quality concerns remain. We aimed to compare two questionnaires: a full birth history module with additional questions on pregnancy losses (FBH+; the current DHS standard) and a full pregnancy history module (FPH), which collects information on all livebirths, stillbirths, miscarriages, and neonatal deaths.

Methods: Women residing in five Health and Demographic Surveillance System sites within the INDEPTH Network (Bandim in Guinea-Bissau, Dabat in Ethiopia, IgangaMayuge in Uganda, Matlab in Bangladesh, and Kintampo in Ghana) were randomly assigned (individually) to be interviewed using either FBH+ or FPH between July 28, 2017, and Aug 13, 2018. The primary outcomes were stillbirths and neonatal deaths in the 5 years before the survey interview (measured by stillbirth rate [SBR] and neonatal mortality rate [NMR]) and mean time taken to complete the maternity history section of the questionnaire. We also assessed between-site heterogeneity. This study is registered with the Research Registry, 4720.

Findings: 69 176 women were allocated to be interviewed by either FBH+ (n=34 805) or FPH (n=34 371). The mean time taken to complete FPH (10·5 min) was longer than for FBH+ (9·1 min; p<0·0001). Using FPH, the estimated SBR was 17·4 per 1000 total births, 21% (95% CI -10 to 62) higher than with FBH+ (15·2 per 1000 total births; p=0·20) in the 5 years preceding the survey interview. There was strong evidence of between-site heterogeneity (I=80·9%; p<0·0001), with SBR higher for FPH than for FBH+ in four of five sites. The estimated NMR did not differ between modules (FPH 25·1 per 1000 livebirths vs FBH+ 25·4 per 1000 livebirths), with no evidence of between-site heterogeneity (I=0·7%; p=0·40).

Interpretation: FPH takes an average of 1·4 min longer to complete than does FBH+, but has the potential to increase reporting of stillbirths in high burden contexts. The between-site heterogeneity we found might reflect variations in interviewer training and survey implementation, emphasising the importance of interviewer skills, training, and consistent implementation in data quality.

Funding: Children's Investment Fund Foundation.
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http://dx.doi.org/10.1016/S2214-109X(20)30044-9DOI Listing
April 2020

The RESPECT Study for consensus on global bereavement care after stillbirth.

Int J Gynaecol Obstet 2020 May 26;149(2):137-147. Epub 2020 Feb 26.

University College London, London, UK.

Objective: To develop global consensus on a set of evidence-based core principles for bereavement care after stillbirth.

Methods: A modified policy-Delphi methodology was used to consult international stakeholders and healthcare workers with experience in stillbirth between September 2017 and October 2018. Five sequential rounds involved two expert stakeholder meetings and three internet-based surveys, including a global internet-based survey targeted at healthcare workers in a wide range of settings.

Results: Initially, 23 expert stakeholders considered 43 evidence-based themes derived from systematic reviews, identifying 10 core principles. The global survey received 236 responses from participants in 26 countries, after which nine principles met a priori criteria for inclusion. The final stakeholder meeting and internet-based survey of all participants confirmed consensus on eight core principles. Highest quality bereavement care should be enabled through training of healthcare staff to reduce stigma and establish respectful care, including acknowledgement and support for grief responses, and provision for physical and psychologic needs. Women and families should be supported to make informed choices, including those concerning their future reproductive health.

Conclusion: Consensus was established for eight principles for stillbirth bereavement care. Further work should explore implementation and involve the voices of women and families globally.
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May 2020
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