CHAMPS produces high-quality surveillance data by using several different sources of information to determine cause of death. CHAMPS gathers information on all stillbirths and deaths in children <5 years that occur within a CHAMPS site. After a death or stillbirth occurs, the CHAMPS team is notified and contacts the family to collect basic information, including the age of the child and the circumstances of the death. Families are also asked if they consent for the deceased to undergo minimally invasive tissues sampling (MITS), a procedure used to help determine a more specific cause-of-death for the child.
In addition to MITS data, CHAMPS collects information on what may have led to the death using Verbal Autopsy interviews and medical records. The information for each CHAMPS case is assembled and then reviewed by a panel of specialists to determine the most likely cause of death.
The success of CHAMPS begins in the field. Specifically, at CHAMPS sites and in the communities where we work. It’s critical to develop good working relationships with site colleagues and community members. CHAMPS accomplishes this through thoughtful communications activities and products that advance understanding of the CHAMPS program and impart a sense of belonging to a network.
CHAMPS uses lessons learned from community engagement to ensure that families who have lost children are respected through culturally appropriate religious and community rituals that honor children in the community who have died.
CHAMPS is taking steps to increase the capacity to use CHAMPS data to impact policies and programs—to ensure that the data saves lives. In addition to supporting data collection and analysis at the CHAMPS sites and by the program office, CHAMPS is supporting countries with CHAMPS sites to develop capacities for data-to-action. The International Association of National Public Health Institutes (IANPHI) is a key partner in working with CHAMPS sites and countries to help public health agencies, for example the National Institute of Health in Mozambique, develop skills and linkages to maximize the use of CHAMPS data.
The steps in data-to-action are:
- Collect data: Systematically gather information on child mortality
- Analyze the data: Transform the data into useful information
- Synthesize information from multiple sources to develop persuasive recommendations
- Analyzed mortality data from CHAMPS
- Other information collected by the CHAMPS project
- Information from the health care system or routine surveillance
- Census data, economic data, recommendations from other groups, expert opinion, etc.
- Increase uptake of recommendations: Provide these recommendations in formats and through channels that will maximize uptake
Informatics transforms raw data into usable information, enabling the large-scale analyses of disease, and is vital to ensuring CHAMPS is collecting timely, accurate and actionable data. CHAMPS sites create a steady stream of data for analysis. The informatics team works to develop detailed models and specifications to ensure standardized collection of comparable data across the initial sites. These carefully defined data elements and the rigorous application of standards ensure that CHAMPS facilitates the collection of consistent, high-quality data across a distributed network of surveillance sites.
Minimally invasive tissue sampling (or “MITS”) is a major component of CHAMPS’ work. The purpose of MITS is to get a more accurate and specific diagnosis of cause of death than would otherwise be available. During MITS, small samples are taken from key organs using needle punctures, then examined through a series of laboratory tests. Samples collected for CHAMPS may include: lung, liver, spleen, brain, bone marrow, and skin, as well as blood and cerebrospinal fluid, stool and possibly urine. The majority of CHAMPS testing and diagnostics conducted by our sites. Laboratories at U.S. CDC conduct some advanced testing and provide technical support.
MITS is a less-invasive alternative to a complete diagnostic autopsy. The MITS procedure differs from full autopsies in that it only targets certain organs and can be performed more quickly with less impact on the appearance of the body.
In order for a CHAMPS case to undergo MITS, the family needs to give consent. It is also important for the body of the deceased to be available soon after death so that MITS can be conducted within the ideal timeframe for the procedure.
MITS can be performed for deaths that occur at a facility, as well as those that take place in the community. This is important because the causes of death may be different based on the location of the death.
CHAMPS sites interview families of the deceased using a Verbal Autopsy (VA) questionnaire to collect information that helps determine cause of death. Information collected includes any illnesses, signs, or symptoms leading up to death.
Pathology is a branch of medical science that studies the causes and nature of disease. It involves the examination of tissues, organs, bodily fluids, and autopsies in order to study and diagnose disease. CHAMPS uses the principles and techniques of pathology to help determine the factors that cause and contribute to child deaths and stillbirths. Through pathology, CHAMPS provides enhanced child mortality surveillance data that can be used to save lives.
Demographic surveillance systems (DSSs) collect information on all individuals living in a defined area and provide valuable population health data. Each CHAMPS site will have a DSS, which will be used as foundation for CHAMPS data collection and will contribute important site characteristics information. Typically, each household in a DSS area is interviewed two or more times per year. The types of data collected may include information on: births and deaths, pregnancies, household characteristics, healthcare utilization, and socioeconomic status.
CHAMPS Determination of Cause of Death (DeCoDe) Panels assign causes of death for CHAMPS cases. Panels are comprised of in-country clinicians, pathologists, microbiologists and epidemiologists. These experts consider the MITS procedure findings and a wide range of data for each case including demographic data, verbal autopsy data, clinical abstraction data, diagnostic results and pathology results to assign underlying and immediate causes of death on a case-by-case basis.
- Increase the feasibility of carrying out CHAMPS mortality and pregnancy surveillance in the community by responding to community concerns and increasing acceptability of CHAMPS activities.
- Develop activities that show respect toward the community and reflect their priorities related to maternal and child health.
In many of the places where CHAMPS works, autopsies are uncommon. Therefore, CHAMPS works closely with communities to help build understanding around the MITS procedure and the added value of MITS in determining cause of death. CHAMPS also takes care to ensure that MITS is conducted in a way that does not interfere with local cultural and religious traditions.
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