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

Abstract

Background: Stillbirths 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.

Discussion: In 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.

Summary: Obtaining 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.

Figure 1

Stillbirth determinants. A framework of the setting and conditions that constitute the data sources needed for the understanding of stillbirth mortality. The classification of significant proportions of underlying causes of death globally is reproduced from CODAC simplified [50].

Figure 2

Definition of stillbirth. The definitions of stillbirth used by WHO and ICD in the framework of the continuum of perinatal losses and commonly used definitions of timing of pregnancy and newborn life. Categories of deaths in pink and periods of perinatal life in blue.

Figure 3

Stillbirth rates by reporting criteria. Norwegian stillbirth rates according to reports based on weight or gestational age. The data include 2.4 million births and 13,100 stillbirths in the Medical Birth Registry of the Norwegian Institute of Public Health.

Figure 4

Dataset template for stillbirths. A template for the development of data collection forms for datasets of stillbirths.

Figure 5

Causes of death in stillbirth. Expandable layers of causes of death according to the resources available for evaluations of stillbirths. Select categories of the CODAC classification system [50] used for illustration.

Figure 6

Operational causes of death. Examples of causes of antepartum and intrapartum deaths that may be targeted directly for stillbirth prevention (e.g., syphilis) or indirectly to improve clinical quality of care or ability to capture data for further improvement. PAD: pathological-anatomical diagnosis.