A scandal of invisibility: making everyone count by counting everyone

Setel, Philip; Macfarlane, Sarah B.; Szreter, Simon; Mikkelsen, Lene; Jha, Prabhat; Stout, Susan; AbouZahr, Carla

doi:10.1016/s0140-6736(07)61307-5

Cited by 387 publications

(344 citation statements)

References 27 publications

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“…However, in most developing countries, health care utilization is generally low with huge discrepancies between different social groups [4]. In such settings, the majority of deaths occur at home and vital registration systems are often incomplete or nonexistent [5]. Lack of quality health care data may cause local health care problems to be misjudged, thereby making it difficult to formulate optimal health care policies.…”

Section: Introductionmentioning

confidence: 99%

Cause-specific mortality in the Kombewa health and demographic surveillance systems site, rural Western Kenya from 2011–2015

Sifuna

Otieno

Ogwang

et al. 2018

Global Health Action

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Background: The vast majority of deaths in the health and Kombewa demographic surveillance system (HDSS) study area are not registered and reported through official systems of vital registration. As a result, few data are available regarding causes of death in this population. Objectives: To describe causes of death among residents of all ages in the Kombewa HDSS, located in rural Western Kenya. Methods: Verbal autopsy (VA) interviews at the site were conducted using the modified 2007 and later 2012 standardized WHO questionnaires. Assignment of causes of death was made using the InterVA-4 model version 4.02. Cox regression model, adjusted for sex, was built to evaluate the influence of age on mortality. Results: There were a total of 5196 deaths recorded between 2011 and 2015 at the site. VA interviews were successfully completed for 3903 of these deaths (75.1%). Mortality rates were highest among neonates HR = 38.54 (<0.001) and among Infants HR = 2.07 (<0.006) in the Kombewa HDSS. Among those deaths in which VA was performed, the top causes of death were HIV/AIDS (12.6%), Malaria (10.3%), Pneumonia (10.1%), Acute abdomen (7.0%), Stroke (5.2%) and TB (4.9%) for the whole population in general. Stroke, acute abdomen heart diseases and Pneumonia were common causes of death (CODs) among the elderly over the age of 65. Conclusions: The analysis established the main CODs among people of all ages within the area served by the Kombewa HDSS. We hope that information generated from this study will help better address preventable deaths in the surveyed community as well as help mitigate negative health impacts in other rural communities throughout the Western Kenya region.

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Section: Introductionmentioning

confidence: 99%

Cause-specific mortality in the Kombewa health and demographic surveillance systems site, rural Western Kenya from 2011–2015

Sifuna

Otieno

Ogwang

et al. 2018

Global Health Action

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“…While the proportion of births registered in Uganda has risen 21% between 2006 and 2011, the country is also home to 5 million children whose births are not registered at all [6]. Many of the countries with the highest burden of deaths have limited or non-existent civil registration systems, contributing to a ‘scandal of invisibility’ [7], particularly regarding stillbirths and newborn deaths [8]. In these settings, population-level data on pregnancy and child mortality outcomes frequently rely on nationally representative household surveys, such as Demographic and Health Surveys (DHS).…”

Section: Introductionmentioning

confidence: 99%

“…Gestational age is rarely known, and misclassification between stillbirths and early neonatal deaths may also occur [12]. In countries with weak civil registration systems, the health sector is often more proactive in capturing pregnancy outcomes through sample registration systems, health and demographic surveillance sites (HDSS), or through population-based household surveys [7]. Sample registration systems are less common, but household surveys and HDSS are widely used in low-resource settings.…”

Section: Introductionmentioning

confidence: 99%

Comparing performance of methods used to identify pregnant women, pregnancy outcomes, and child mortality in the Iganga-Mayuge Health and Demographic Surveillance Site, Uganda

Kadobera

Waiswa

Peterson

et al. 2017

Global Health Action

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Background: In most low and middle-income countries vital events registration for births and child deaths is poor, with reporting of pregnancy outcomes highly inadequate or non-existent. Health and Demographic Surveillance System (HDSS) sites and periodic population-based household-level surveys can be used to identify pregnancies and retrospectively capture pregnancy outcomes to provide data for decision making. However, little is known about the performance of different methods in identifying pregnancy and pregnancy outcomes, yet this is critical in assessing improvements in reducing maternal and newborn mortality and stillbirths. Objective: To explore differences between a population-based household pregnancy survey and prospective health demographic surveillance system in identifying pregnancies and their outcomes in rural eastern Uganda. Methods: The study was done within the Iganga-Mayuge HDSS site, a member centre of the INDEPTH Network. Prospective data about pregnancies and their outcomes was collected in the routine biannual census rounds from 2006 to 2010 in the HDSS. In 2011 a cross-sectional survey using the pregnancy history survey (PHS) tool was conducted among women aged 15 to 49 years in the HDSS area. We compared differences between the HDSS biannual census updates and the PHS capture of pregnancies identified as well as neonatal and child deaths, stillbirths and abortions. Findings: A total of 10,540 women aged 15 to 49 years were interviewed during the PHS. The PHS captured 12.8% more pregnancies than the HDSS in the most recent year (2010–2011), though between 2006 and 2010 (earlier periods) the PHS captured only 137 (0.8%) more pregnancies overall. The PHS also consistently identified more stillbirths (18.2%), spontaneous abortions (94.5%) and induced abortions (185.8%) than the prospective HDSS update rounds. Conclusions: Surveillance sites are designed to prospectively track population-level outcomes. However, the PHS identified more pregnancy-related outcomes than the HDSS in this study. Asking about pregnancy and its outcomes may be a useful way to improve measurement of pregnancy outcomes. Further research is needed to identify the most effective methods of improving the capture of pregnancies and their outcomes within HDSS sites, household surveys and routine health information systems.

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“…In Ethiopia, as in many developing countries [4][5][6][7], there are no complete or reliable records of births and deaths at the national level. Institution-based data are grossly deficient and biased due to limited access to or utilization of health services.…”

Section: Introductionmentioning

confidence: 99%

Prevalence of Cardiovascular Emergencies in Specialized Hospital, Addis Ababa Ethiopia

Hailemariam¹

2014

Emergency Medicine

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A scandal of invisibility: making everyone count by counting everyone

Cited by 387 publications

References 27 publications

Cause-specific mortality in the Kombewa health and demographic surveillance systems site, rural Western Kenya from 2011–2015

Cause-specific mortality in the Kombewa health and demographic surveillance systems site, rural Western Kenya from 2011–2015

Comparing performance of methods used to identify pregnant women, pregnancy outcomes, and child mortality in the Iganga-Mayuge Health and Demographic Surveillance Site, Uganda

Prevalence of Cardiovascular Emergencies in Specialized Hospital, Addis Ababa Ethiopia

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