Making stillbirths count, making numbers talk - Issues in data collection for stillbirths

Abstract

BackgroundStillbirths need to count. They constitute the majority of the world's perinatal deaths and yet, they are largely invisible. Simply counting stillbirths is only the first step in analysis and prevention. From a public health perspective, there is a need for information on timing and circumstances of death, associated conditions and underlying causes, and availability and quality of care. This information will guide efforts to prevent stillbirths and improve quality of care.DiscussionIn this report, we assess how different definitions and limits in registration affect data capture, and we discuss the specific challenges of stillbirth registration, with emphasis on implementation. We identify what data need to be captured, we suggest a dataset to cover core needs in registration and analysis of the different categories of stillbirths with causes and quality indicators, and we illustrate the experience in stillbirth registration from different cultural settings. Finally, we point out gaps that need attention in the International Classification of Diseases and review the qualities of alternative systems that have been tested in low- and middle-income settings.SummaryObtaining high-quality data will require consistent definitions for stillbirths, systematic population-based registration, better tools for surveys and verbal autopsies, capacity building and training in procedures to identify causes of death, locally adapted quality indicators, improved classification systems, and effective registration and reporting systems.

Missing stillbirth data: a hospital based study

“…Accurately counting will provide an opportunity to set specific goals, the first step towards any improvement. 1 In a study on underreporting of pertussis cases it was observed that diffused responsibility of reporting among different personnel and absence of proper definition for the disease to be reported, manual processes of data entry combined with knowledge deficits, contribute to problems with underreporting.…”

“…16 Failure to adhere to WHO definitions hampers stillbirth epidemiology. 1 In the present study only 59.64% of stillbirth had data on birth weight and sex in stillbirth register, data on rest of the stillbirth could be included in the study just because the data was available in the case sheet. Data on macerated vs. fresh was not available both on case sheet and the register for any of the stillbirth.…”

“…Accurately counting stillbirths is the first step towards any improvement. 1 A fetal death is defined as "death prior to the complete expulsion or extraction from its mother of a product of conception, irrespective of the duration of pregnancy; the death is indicated by the fact that after such separation the fetus does not breathe or show any other evidence of life, such as beating of the heart, pulsation of the umbilical cord, or definite movement of voluntary muscles" without specification of the duration of pregnancy and ICD classifies late fetal deaths as one born with birth weight greater than 1000 gms or after 28 weeks of pregnancy. 2,3 For purposes of international comparison late fetal deaths are considered as stillbirths.…”

National, regional, and worldwide estimates of stillbirth rates in 2009 with trends since 1995: a systematic analysis

“…Vital registration data, when collected and reported by gestational age or birthweight alone, underestimated the stillbirth rate in Norwegian and Australian historical data for stillbirths at 22 weeks and older or 500 g birthweight and more by 19-30%, although in Norway once the stillbirth rate was less than fi ve per 1000 total births, the under-reporting was reduced to about 10%. 26 Thus, vital registration data cannot be thought of as an unalloyed gold standard. Comparison of the estimated trends with reported trends by country suggests that the current model's accuracy of predicting trends is close to that of the actual reported trends.…”

Audit into stillbirths: a tertiary hospital experience

“…It also reflects the quality of antenatal care and obstetric management during labor and childbirth. 5,6 A stillbirth is emotionally devastating for the patients and the clinicians and many of these are preventable. Most often, the cause of the stillbirth cannot be identified.…”