Enhancing routine surveillance to improve stillbirth data
Authors: Elizabeth M McClure
Journal: The Lancet Global Health (2020)

Stillbirth is a devastating loss for women and their families. Historically, stillbirths have not been included in global mortality estimates and, even with recent efforts to include them,1Frøen JF Friberg IK Lawn JE et al.Stillbirths: progress and unfinished business.Lancet. 2016; 387: 574-586Summary Full Text Full Text PDF PubMed Scopus (108) Google Scholar the rate of stillbirths has largely been underestimated. Challenges to accurate reporting of stillbirths include social stigma and misclassification with miscarriage or early neonatal deaths.2Blencowe H Cousens S Jassir FB et al.National, regional, and worldwide estimates of stillbirth rates in 2015, with trends from 2000: a systematic analysis.Lancet Glob Health. 2016; 4: e98-e108Summary Full Text Full Text PDF PubMed Scopus (533) Google Scholar Since 1984, one of the primary methods to quantify mortality in low-income and middle-income countries (LMICs) has been the Demographic and Health Survey (DHS).3Boerma JT Sommerfelt AE Demographic and health surveys (DHS): contributions and limitations.World Health Stat Q. 1993; 46: 222-226PubMed Google Scholar Despite substantial investment of time and resources in the DHS programme worldwide, the quality of data arising from these surveys has been variable.4O'Hagan R Marx MA Finnegan KE et al.National assessment of data quality and associated systems-level factors in Malawi.Glob Health Sci Pract. 2017; 5: 367-381Crossref PubMed Scopus (25) Google Scholar Few research studies have attempted to uncover the underlying reasons for this variation5Hancioglu A Arnold F Measuring coverage in MNCH: tracking progress in health for women and children using DHS and MICS household surveys.PLoS Med. 2013; 10: e1001391Crossref PubMed Scopus (149) Google Scholar and, to date, no randomised trials (the gold standard for research) have been done to improve DHS methodology. In The Lancet Global Health, Joseph Akuze and colleagues6Akuze J Blencowe H Waiswa P et al.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; 8: e555-e566Summary Full Text Full Text PDF PubMed Scopus (23) Google Scholar report findings of a trial to assess whether the way women are asked about previous pregnancies and pregnancy losses through the DHS programme affects their reporting of a pregnancy loss and, in particular, stillbirth. As part of the Every Newborn-INDEPTH project, Akuze and colleagues compared the traditional DHS approach of obtaining a full birth history, focused on pregnancies ending in livebirths, with additional questions on pregnancy loss (referred to as FBH+) with a full pregnancy history (FPH), which focused on all of a woman's pregnancies. The primary distinction between these methods is the emphasis on pregnancies compared with livebirths. For both, stillbirths are defined as a fetal death occurring at 28 weeks of gestation or later. The Every Newborn-INDEPTH study was done at five sites in LMICs; 69 176 women were randomly allocated either the FBH+ or the FPH DHS questionnaire, and each were administered by trained examiners. The stillbirth rate was 15·2 per 1000 births with FBH+ versus 17·4 per 1000 births with FPH, a 21% increase (95% CI −10 to 62) in reported stillbirth rates (p=0·20). However, stillbirth rates differed substantially by site, ranging from 8·1 to 20·2 per 1000 births with FBH+ and from 10·6 to 25·5 per 1000 births with FPH (I2=80·9%, p<0·0001). Even with the wide range in stillbirth rates, all but one site reported higher stillbirth rates using FPH than with FBH+. Akuze and colleagues postulated that between-site variations in surveillance workers' training was possibly a component that contributed to the variation in stillbirth rates. Although changes in stillbirth rates were noted with the different questionnaires, Akuze and colleagues reported no substantial difference in reported neonatal mortality rates (25·1 per 1000 livebirths with FPH vs 25·4 per 100 livebirths with FBH+). Thus, although FPH might have helped to identify stillbirths that were previously unreported by women, this questionnaire could have limitations in addressing potential gaps in completeness of neonatal mortality data. For example, additional methodology might be needed to address the important issue of misclassification of stillbirths and early neonatal deaths. The Every Newborn-INDEPTH study highlights how methods for capturing mortality rates affect the rates reported. This understanding is especially important for stillbirth rates, which remain under-reported worldwide.7Lawn JE Blencowe H Waiswa P et al.Stillbirths: rates, risk factors, and acceleration towards 2030.Lancet. 2016; 387: 587-603Summary Full Text Full Text PDF PubMed Scopus (856) Google Scholar Although the FPH approach seemed to improve stillbirth reporting, substantial gaps remain. Alternatives for more accurate stillbirth data are prospective population-based studies, eg, AMANHI8Alliance for Maternal and Newborn Health Improvement (AMANHI) mortality study groupPopulation-based rates, timing, and causes of maternal deaths, stillbirths, and neonatal deaths in south Asia and sub-Saharan Africa: a multi-country prospective cohort study.Lancet Glob Health. 2018; 6: e1297-e1308Summary Full Text Full Text PDF PubMed Scopus (116) Google Scholar and Global Network,9Saleem S Tikmani SS McClure EM et al.Trends and determinants of stillbirth in developing countries: results from the Global Network's Population-Based Birth Registry.Reprod Health. 2018; 15: 100Crossref PubMed Scopus (48) Google Scholar which enrolled women in early pregnancy with follow-up to delivery. In AMANHI, stillbirth rates were reported of 35·1 per 1000 births at a south Asia site and 17·1 per 1000 births at sub-Saharan African sites;8Alliance for Maternal and Newborn Health Improvement (AMANHI) mortality study groupPopulation-based rates, timing, and causes of maternal deaths, stillbirths, and neonatal deaths in south Asia and sub-Saharan Africa: a multi-country prospective cohort study.Lancet Glob Health. 2018; 6: e1297-e1308Summary Full Text Full Text PDF PubMed Scopus (116) Google Scholar in the Global Network, stillbirth rates were reported from 21·3 per 1000 births for African sites to 56·9 per 1000 for Pakistani sites.9Saleem S Tikmani SS McClure EM et al.Trends and determinants of stillbirth in developing countries: results from the Global Network's Population-Based Birth Registry.Reprod Health. 2018; 15: 100Crossref PubMed Scopus (48) Google Scholar In another study, Anwar and colleagues10Anwar J Torvaldsen S Sheikh M Taylor R Under-estimation of maternal and perinatal mortality revealed by an enhanced surveillance system: enumerating all births and deaths in Pakistan.BMC Public Health. 2018; 18: 428Crossref PubMed Scopus (12) Google Scholar reported that the stillbirth rate in Pakistan was 50 per 1000 births using an enhanced surveillance system versus 29 per 1000 births with the traditional DHS approach (p<0·0001). Studies such as these point to the substantial gap in reporting of stillbirths in routine reporting systems such as the DHS programme, even with enhancements. However, studies need substantial resources and are unlikely to be scalable in LMICs. Improving the DHS programme and other routine surveillance data is vital as countries aim to meet the UN Sustainable Development Goals.7Lawn JE Blencowe H Waiswa P et al.Stillbirths: rates, risk factors, and acceleration towards 2030.Lancet. 2016; 387: 587-603Summary Full Text Full Text PDF PubMed Scopus (856) Google Scholar The DHS programme remains an important source for estimating global stillbirth trends2Blencowe H Cousens S Jassir FB et al.National, regional, and worldwide estimates of stillbirth rates in 2015, with trends from 2000: a systematic analysis.Lancet Glob Health. 2016; 4: e98-e108Summary Full Text Full Text PDF PubMed Scopus (533) Google Scholar and, thus, efforts are warranted to improve accuracy of birth outcome data. The INDEPTH study is a step towards improved stillbirth data, which builds on an existing infrastructure. Accurate population-based data can help inform policy and, ultimately, reduce global mortality rates. I declare no competing interests. Randomised comparison of two household survey modules for measuring stillbirths and neonatal deaths in five countries: the Every Newborn-INDEPTH studyFPH 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. Full-Text PDF Open Access