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

• Published in: BMC pregnancy and childbirth Vol. 9; no. 1; p. 58
• Main Authors: Frøen, J Frederik, Gordijn, Sanne J, Abdel-Aleem, Hany, Bergsjø, Per, Betran, Ana, Duke, Charles W, Fauveau, Vincent, Flenady, Vicki, Hinderaker, Sven Gudmund, Hofmeyr, G Justus, Jokhio, Abdul Hakeem, Lawn, Joy, Lumbiganon, Pisake, Merialdi, Mario, Pattinson, Robert, Shankar, Anuraj
• Format: Journal Article
• Language: English
• Published: England BioMed Central 17-12-2009; BioMed Central Ltd; BMC
• Subjects: Cause of Death - trends; Data Collection - methods; Debate; Female; Fetal Death - classification; Fetal Death - epidemiology; Fetal Death - prevention & control; Global Health; Health care; Hospitals; Humans; Infant Mortality - trends; Infant, Newborn; International Classification of Diseases; Mortality; Pregnancy; Preventive Health Services - organization & administration; Public health; Registries - statistics & numerical data; Research Design; Risk Factors; Stillbirth; Stillbirth - epidemiology
• ISSN: 1471-2393; 1471-2393
• DOI: 10.1186/1471-2393-9-58

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.
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.
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.