Do different HDSS surveillance systems result in different quality of pregnancy outcome data? Akuze, J; Baschieri, A; Kerber, K; Gordeev, V; Waiswa, P; Blencowe, H; Kwesiga, D; Floyd, S.; Lawn, J. On behalf of the INDEPTH Network – ENAP metrics study team ABSTRACT An approximate of 2.6 million stillbirths, 2.7 million neonatal deaths and 303,000 women die from pregnancy and childbirth related complications every year. Low and Middle income countries in Asia and Sub-Saharan Africa bare the largest burden. The INDEPTH Network has various potential roles to inform the global maternal and newborn agenda, and improving population-based birth outcome measurement but faces many challenges. Initial steps are in place to improve the measurement of pregnancies and their outcomes. Five HDSS sites with a population more than 30000, annual stillbirth rates and neonatal mortality rates greater than 15 per 1000 live births, high quality surveillance for birth outcomes, presence of expertise related to maternal, newborn health and stillbirth and evidence of co-funding were selected to participate in the Every Newborn Action Plan Improvement Measurement Roadmap collaborative study. Different HDSS sites have alternative systems for collecting of pregnancies and outcomes data with different intervals (surveillance rounds), different types of village informants, and different modalities for linking health facility and HDSS data, these components could affect measurement or pregnancies and their outcomes. Two out of five sites were able to link health facility and HDSS data. All sites had records of birthweight from either; community measurement, or mother’s health cards and or health facility records. Unlike birthweight, gestational age was not easily estimated by all sites. [220 words]
INTRODUCTION An approximate of 2.6 million stillbirths, 2.7 million neonatal deaths and 303,000 women die from pregnancy and childbirth related complications every year (1). Low and Middle income countries in Asia and Sub-Saharan Africa bare the largest burden(2). Whilst substantial strides in halving child and maternal mortality have been made although a slower progress is seen for reduction of stillbirths and neonatal deaths. Between 2000 and 2015 the global annual rate reduction was observed for stillbirths (2.0%), neonatal mortality (3.1%), maternal mortality (3.0%) and under-5-year old mortality (4.5%) (3). As a result, the Every Newborn Action Plan (ENAP) to end preventable death was launched in June 2014 (4). The plan was based on evidence published in The Lancet Every Newborn series (5) and on consultations with member states, organizations and individuals culminating into a World Health Assembly resolution. The ENAP is closely linked to the Ending Preventable Maternal Mortality targets and strategies (6). The ENAP set targets for the Sustainable Development Goal (SDG) era, of 12 or fewer newborn deaths per 1,000 live births and 12 or fewer stillbirths per 1,000 total births in every country by 2030 (4, 7). The neonatal mortality target is a sub-target under SDG 3 (7). If practices remain the same, these targets will not be achieved. The INDEPTH Network, a consortium of Health and Demographic Surveillance System (HDSS) sites in 20 low and middle income countries, spread over 3 continents was founded in 1998, to coordinate and bring together a number of already existing HDSS sites (8). The Network is currently made up of 46 member centres, and 53 HDSS field sites who are full members. HDSS sites that are associate members and non- members are encouraged to join the network as full members (8). All centres collect valuable data through the HDSS sites that provide a picture of the health status of the communities through data collection from entire communities over extended time periods (9). Most of these sites are in Sub-Saharan Africa (SSA) and South Asia. All centres collect data mandatory on their populations (including demographic, socio-economic, births, deaths, migrations, environmental, and verbal autopsy) prospectively at least once a year. Besides the mandatory data, the HDSS sites also conduct other research including; HIV, genetics, immunization, clinical trials among others (9). The INDEPTH Network works through Working Groups, one of which is the Maternal, Newborn and Child Working Group (MNCWG) whose main goal is to support coordinated, multi-site generation of evidence to inform policy and programmes for maternal, newborn and child health and survival in low income countries (10). The INDEPTH MWCNG has various potential roles to inform the global maternal and newborn health agenda (8). Since pregnancies, births, stillbirths, deaths, gestational age and birth weight are monitored routinely within HDSS sites, the sites are well placed to assist in improving the tracking of various ENAP and SDG indicators including stillbirth rate, neonatal mortality rate, low birth weight rate, and preterm birth rate. The Network can improve the measurement of outcomes, test innovations to improve outcomes around the time of birth and engage champions who will steer the course of reproductive, maternal and newborn health as we move towards achieving the SDG 3 and ENAP targets. Although the INDEPTH Network has potential for improving population-based pregnancy outcome measurement, it faces several challenges including:
a) Many proposed ENAP birth outcome impact indicators including stillbirth, birth weight and gestational age are not currently included within some HDSS surveillance systems or when available, the quality of the data is highly variable across sites; b) Most of the sites lack experience in conducting maternal and newborn health tracking; c) Some sites also lack the necessary funding to facilitate this nature of specialized research (11). The INDEPTH Network’s HDSS sites follow vital events in a defined population prospectively and they are able to document pregnancy outcome data on a regular basis (8). Different HDSS systems use various methods to record vital events. Some HDSS sites have a target system to follow pregnancies and pregnancy outcomes. Considering this unique platform, a collaborati ve study “ ENAP measurement improvement roadmap” or “ENAP metrics” is being conducted in five HDSS sites for a period of 3 years (2016 – 2018) within the INDEPTH Network. The ENAP metrics collaborative study aims to assess whether the “pregnancy history” approach is more accurate for capture of pregnancies and their outcomes compared to standard Demographic Health Survey version seven (DHS- 7) “birth history” and how it affects the length of data collection in standardized surveys. This research paper is part of the wider ENAP metrics study and it aims to compare different HDSS systems through assessing how they (HDSS systems) differ in the quality of pregnancy outcome data DATA AND METHODS A Request for Applications (RFA) was published within the INDEPTH Network to all 53 HDSS sites by the INDEPTH Network secretariat about the ENAP Measurement Improvement Roadmap and fourteen proposals were received. The received proposals underwent an expert review through an internal review process spearheaded by the London School of Hygiene and Tropical Medicine (LSHTM), Makerere University School of Public Health (MakSPH) and INDEPTH Network secretariat. All sites that expressed their interest through returning applications for the RFA received personalised feedback about the status of their application (12). We selected five HDSS sites for the ENAP metrics project that had a system in place to follow pregnancy outcomes. These HDSS sites included; Bandim HDSS, Dabat HDSS, Iganga- Mayuge HDSS, Kintampo HDSS and Matlab HDSS. The five successful sites were selected basing on: Presence of a HDSS total population more than 30000. Annual SBR and NMR greater than 15 per 1000 live births. High quality surveillance for birth outcomes including neonatal deaths and stillbirths. Present expertise related to maternal, newborn health and stillbirths from the team members of the applying HDSS and evidence of co-funding in the HDSS submitted estimated budgets. Within the ENAP metrics study, we reviewed the RFA’s of the five HDSS sites to est ablish the status of maternal and newborn indicators and HDSS systems. From these reviews, the HDSS sites were encouraged to suggest enhancements that are within the HDSS’s ethical approval and mandate, these improvements were to help steer the HDSS towards improved capture of pregnancy outcomes. Some of the Initial steps taken to improve birth outcome indicators included; encouraging HDSS sites to include additional important questions in their surveillance instruments, conducting refresher trainings for their current staff, introducing pregnancy registration and testing among others.
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