Modified Pathway to Survival highlights importance of rapid access to quality institutional delivery care to decrease neonatal mortality in Serang and Jember districts, Java, Indonesia.

Background: Three-quarters of births in Indonesia occur in a health facility, yet the neonatal mortality rate remains high at 15 per 1000 live births. The Pathway to Survival (P-to-S) framework of steps needed to return sick neonates and young children to health focuses on caregiver recognition of and care-seeking for severe illness. In view of increased institutional delivery in Indonesia and other low- and middle-income countries, a modified P-to-S is needed to assess the role of maternal complications in neonatal survival. Methods: We conducted a retrospective cross-sectional verbal and social autopsy study of all neonatal deaths from June through December 2018, identified by a proven listing method in two districts of Java, Indonesia. We examined care-seeking for maternal complications, delivery place, and place and timing of neonatal illness onset and death. Results: The fatal illnesses of 189/259 (73%) neonates began in their delivery facility (DF), 114/189 (60%) of whom died before discharge. Mothers whose neonate's illness started at their delivery hospital and lower-level DF were more than six times (odds ratio (OR) = 6.5; 95% confidence interval (CI) = 3.4-12.5) and twice (OR = 2.0; 95% CI = 1.01-4.02) as likely to experience a maternal complication as those whose neonates fell fatally ill in the community, and illness started earlier (mean = 0.3 vs 3.6 days; P < 0.001) and death came sooner (3.5 vs 5.3 days; P = 0.06) to neonates whose illness started at any DF. Despite going to the same number of providers/facilities, women with a labour and delivery (L/D) complication who sought care from at least one other provider or facility on route to their DF took longer than those without a complication to reach their DF (median = 3.3 vs 1.3 hours; P = 0.01). Conclusions: Neonates' fatal illness onset in their DF was strongly associated with maternal complications. Mothers with a L/D complication experienced delays in reaching their DF, and nearly half the neonatal deaths occurred in association with a complication, suggesting that mothers with complications first seeking care at a hospital providing emergency maternal and neonatal care might have prevented some deaths. A modified P-to-S highlights the importance of rapid access to quality institutional delivery care in settings where many births occur in facilities and/or there is good care-seeking for L/D complications.

Care-seeking and health insurance among pregnancy-related deaths: A population-based study in Jember District, East Java Province, Indonesia.

BACKGROUND: Despite the increased access to facility-based delivery in Indonesia, the country's maternal mortality remains unacceptably high. Reducing maternal mortality requires a good understanding of the care-seeking pathways for maternal complications, especially with the government moving toward universal health coverage. This study examined care-seeking practices and health insurance in instances of pregnancy-related deaths in Jember District, East Java, Indonesia. METHODS: This was a community-based cross-sectional study to identify all pregnancy-related deaths in the district from January 2017 to December 2018. Follow-up verbal and social autopsy interviews were conducted to collect information on care-seeking behavior, health insurance, causes of death, and other factors. FINDINGS: Among 103 pregnancy-related deaths, 40% occurred after 24 hours postpartum, 36% during delivery or within the first 24 hours postpartum, and 24% occurred while pregnant. The leading causes of deaths were hemorrhage (38.8%), pregnancy-induced hypertension (20.4%), and sepsis (16.5%). Most deaths occurred in health facilities (81.6%), primarily hospitals (74.8%). Nearly all the deceased sought care from a formal health provider during their fatal illness (93.2%). Seeking any care from an informal provider during the fatal illness was more likely among women who died after 24 hours postpartum (41.0%, OR 7.4, 95% CI 1.9, 28.5, p = 0.049) or during pregnancy (29.2%, OR 4.4, 95% CI 1.0, 19.2, p = 0.003) than among those who died during delivery or within 24 hours postpartum (8.6%). There was no difference in care-seeking patterns between insured and uninsured groups. CONCLUSIONS: The fact that women sought care and reached health facilities regardless of their insurance status provides opportunities to prevent deaths by ensuring that every woman receives timely and quality care. Accordingly, the increasing demand should be met with balanced readiness of both primary care and hospitals to provide quality care, supported by an effective referral system.

Neonatal mortality in two districts in Indonesia: Findings from Neonatal Verbal and Social Autopsy (VASA).

BACKGROUND: The Government of Indonesia is determined to follow global commitments to reduce the neonatal mortality rate. Yet, there is a paucity of information on contributing factors and causes of neonatal deaths, particularly at the sub-national level. This study describes care-seeking during neonates' fatal illnesses and their causes of death. METHODS: We conducted a cross-sectional community-based study to identify all neonatal deaths in Serang and Jember Districts, Indonesia. Follow-up interviews were conducted with the families of deceased neonates using an adapted verbal and social autopsy instrument. Cause of death was determined using the InSilicoVA algorithm. RESULTS: The main causes of death of 259 neonates were prematurity (44%) and intrapartum-related events (IPRE)-mainly birth asphyxia (39%). About 83% and 74% of the 259 neonates were born and died at a health facility, respectively; 79% died within the first week after birth. Of 70 neonates whose fatal illness began at home, 59 (84%) sought care during the fatal illness. Forty-eight of those 59 neonates went to a formal care provider; 36 of those 48 neonates (75%) were moderately or severely ill when the family decided to seek care. One hundred fifteen of 189 neonates (61%) whose fatal illnesses began at health facilities were born at a hospital. Among those 115, only 24 (21%) left the hospital alive-of whom 16 (67%) were referred by the hospital. CONCLUSIONS: The high proportion of deaths due to prematurity and IPRE suggests the need for improved management of small and asphyxiated newborns. The moderate to severe condition of neonates at the time when care was sought from home highlights the importance of early illness recognition and appropriate management for sick neonates. Among deceased neonates whose fatal illness began at their delivery hospital, the high proportion of referrals may indicate issues with hospital capability, capacity, and/or cost.

The WHO 2016 verbal autopsy instrument: An international standard suitable for automated analysis by InterVA, InSilicoVA, and Tariff 2.0.

BACKGROUND: Verbal autopsy (VA) is a practical method for determining probable causes of death at the population level in places where systems for medical certification of cause of death are weak. VA methods suitable for use in routine settings, such as civil registration and vital statistics (CRVS) systems, have developed rapidly in the last decade. These developments have been part of a growing global momentum to strengthen CRVS systems in low-income countries. With this momentum have come pressure for continued research and development of VA methods and the need for a single standard VA instrument on which multiple automated diagnostic methods can be developed. METHODS AND FINDINGS: In 2016, partners harmonized a WHO VA standard instrument that fully incorporates the indicators necessary to run currently available automated diagnostic algorithms. The WHO 2016 VA instrument, together with validated approaches to analyzing VA data, offers countries solutions to improving information about patterns of cause-specific mortality. This VA instrument offers the opportunity to harmonize the automated diagnostic algorithms in the future. CONCLUSIONS: Despite all improvements in design and technology, VA is only recommended where medical certification of cause of death is not possible. The method can nevertheless provide sufficient information to guide public health priorities in communities in which physician certification of deaths is largely unavailable. The WHO 2016 VA instrument, together with validated approaches to analyzing VA data, offers countries solutions to improving information about patterns of cause-specific mortality.

Towards universal civil registration and vital statistics systems: the time is now.

The health and development challenges of the coming decades cannot be tackled effectively without reliable data for births, deaths, and causes of death, which only a comprehensive civil registration and vital statistics (CRVS) system can deliver. Alternative methods such as surveys, censuses, or surveillance are not adequate substitutes from a statistical perspective, and do not provide individuals with the legal documentation they need to benefit from services and participate fully in a modern society. Research is needed to generate and disseminate evidence about which CRVS strategies work best in which contexts and to ensure that the potential benefits of innovation are successfully scaled up, and that possible pitfalls are avoided. Research findings need to be compiled and made readily accessible to users for policy making, programming, and practice. Modernisation of CRVS systems necessitates new, broad-based national and international coalitions. The global architecture for CRVS, so far dominated by UN agencies, should extend to include bilateral donors, funds, foundations, non-governmental organisations, the private sector, academic institutions, and civil society. This change is essential to ensure that further development of CRVS systems is inclusive, participatory, multisectoral, and has a strong evidence base.

A global assessment of civil registration and vital statistics systems: monitoring data quality and progress.

Increasing demand for better quality data and more investment to strengthen civil registration and vital statistics (CRVS) systems will require increased emphasis on objective, comparable, cost-effective monitoring and assessment methods to measure progress. We apply a composite index (the vital statistics performance index [VSPI]) to assess the performance of CRVS systems in 148 countries or territories during 1980-2012 and classify them into five distinct performance categories, ranging from rudimentary (with scores close to zero) to satisfactory (with scores close to one), with a mean VSPI score since 2005 of 0·61 (SD 0·31). As expected, the best performing systems were mostly in the European region, the Americas, and Australasia, with only two countries from east Asia and Latin America. Most low-scoring countries were in the African or Asian regions. Globally, only modest progress has been made since 2000, with the percentage of deaths registered increasing from 36% to 38%, and the percentage of children aged under 5 years whose birth has been registered increasing from 58% to 65%. However, several individual countries have made substantial improvements to their CRVS systems in the past 30 years by capturing more deaths and improving accuracy of cause-of-death information. Future monitoring of the effects of CRVS strengthening will greatly benefit from application of a metric like the VSPI, which is objective, costless to compute, and able to identify components of the system that make the largest contributions to good or poor performance.

Are well functioning civil registration and vital statistics systems associated with better health outcomes?

In this Series paper, we examine whether well functioning civil registration and vital statistics (CRVS) systems are associated with improved population health outcomes. We present a conceptual model connecting CRVS to wellbeing, and describe an ecological association between CRVS and health outcomes. The conceptual model posits that the legal identity that civil registration provides to individuals is key to access entitlements and services. Vital statistics produced by CRVS systems provide essential information for public health policy and prevention. These outcomes benefit individuals and societies, including improved health. We use marginal linear models and lag-lead analysis to measure ecological associations between a composite metric of CRVS performance and three health outcomes. Results are consistent with the conceptual model: improved CRVS performance coincides with improved health outcomes worldwide in a temporally consistent manner. Investment to strengthen CRVS systems is not only an important goal for individuals and societies, but also a development imperative that is good for health.

Civil registration and vital statistics: progress in the data revolution for counting and accountability.

New momentum for civil registration and vital statistics (CRVS) is building, driven by the confluence of growing demands for accountability and results in health, improved equity, and rights-based approaches to development challenges, and by the immense potential of innovation and new technologies to accelerate CRVS improvement. Examples of country successes in strengthening of hitherto weak systems are emerging. The key to success has been to build collaborative partnerships involving local ownership by several sectors that span registration, justice, health, statistics, and civil society. Regional partners can be important to raise awareness, set regional goals and targets, foster country-to-country exchange and mutual learning, and build high-level political commitment. These regional partners continue to provide a platform through which country stakeholders, development partners, and technical experts can share experiences, develop and document good practices, and propose innovative approaches to tackle CRVS challenges. This country and regional momentum would benefit from global leadership, commitment, and support.

Better health intelligence: a new era for civil registration and vital statistics?

The impetus and opportunities for improving birth, death, and cause of death data have never been more propitious. Renewed country commitment to strengthen vital registration systems is clearly evident, supported by nascent regional coalitions of technical and development organisations. The announcement of a major new investment by Bloomberg Philanthropies to strengthen data systems and capacity in selected countries has the potential to catalyse and realise significant improvements in the availability and quality of data for health. This will require technical leadership, strategic intervention choices, strong country partnerships, and efficient delivery and management of multiple technical interventions across participating countries.

"It's all the time in my mind": facilitators of adherence to antiretroviral therapy in a Tanzanian setting.

Although HIV positive patients' adherence to antiretroviral therapy (ART) is relatively high in African nations, as compared with industrialized nations, few studies have explored why. In the research presented here we aimed to understand the dynamics of good adherence to ART among patients receiving free ART and HIV-related services from a clinic in Arusha, Tanzania. We conducted individual semi-structured interviews with 6 health care providers and 36 patients at a health care center in Arusha in 2006. Interviews were conducted in Swahili using interview guides informed by social cognitive theory. All interviews were audio-recorded, transcribed in Kiswahili, translated into English and coded for themes and patterns with ATLAS.ti. Of the 36 patients interviewed (mean time on ART 9.8 months; range 1-23 months), 32 reported perfect adherence in the previous month. Self-reported adherence was high despite economic hardship, depression, low rates of HIV disclosure and high perceived HIV-associated stigma. Five factors emerged to explain excellent adherence in the face of such barriers. First, all respondents experienced substantial improvements in their health after starting ART; this supported their confidence in the medication and motivated them to adhere. Second, their perceived need to be able to meet their family responsibilities motivated respondents to stay healthy. Third, respondents developed specific strategies to remember to take pills, particularly routinizing pill-taking by linking it with daily activities or events. Fourth, material and emotional support received from others facilitated adherence. Finally, respondents trusted the advice and instructions of their health care providers, who regularly emphasized adherence. The facilitating factors identified were consistent with the constructs of social cognitive theory and highlighted the importance of interventions that address multiple levels of influence on adherence.

Core verbal autopsy procedures with comparative validation results from two countries.

BACKGROUND: Cause-specific mortality statistics remain scarce for the majority of low-income countries, where the highest disease burdens are experienced. Neither facility-based information systems nor vital registration provide adequate or representative data. The expansion of sample vital registration with verbal autopsy procedures represents the most promising interim solution for this problem. The development and validation of core verbal autopsy forms and suitable coding and tabulation procedures are an essential first step to extending the benefits of this method. METHODS AND FINDINGS: Core forms for peri- and neonatal, child, and adult deaths were developed and revised over 12 y through a project of the Tanzanian Ministry of Health and were applied to over 50,000 deaths. The contents of the core forms draw upon and are generally comparable with previously proposed verbal autopsy procedures. The core forms and coding procedures based on the International Statistical Classification of Diseases (ICD) were further adapted for use in China. These forms, the ICD tabulation list, the summary validation protocol, and the summary validation results from Tanzania and China are presented here. CONCLUSIONS: The procedures are capable of providing reasonable mortality estimates as adjudged against stated performance criteria for several common causes of death in two countries with radically different cause structures of mortality. However, the specific causes for which the procedures perform well varied between the two settings because of differences in the underlying prevalence of the main causes of death. These differences serve to emphasize the need to undertake validation studies of verbal autopsy procedures when they are applied in new epidemiological settings.

Validity of verbal autopsy procedures for determining cause of death in Tanzania.

OBJECTIVES: To validate verbal autopsy (VA) procedures for use in sample vital registration. Verbal autopsy is an important method for deriving cause-specific mortality estimates where disease burdens are greatest and routine cause-specific mortality data do not exist. METHODS: Verbal autopsies and medical records (MR) were collected for 3123 deaths in the perinatal/neonatal period, post-neonatal <5 age group, and for ages of 5 years and over in Tanzania. Causes of death were assigned by physician panels using the International Classification of Disease, revision 10. Validity was measured by: cause-specific mortality fractions (CSMF); sensitivity; specificity and positive predictive value. Medical record diagnoses were scored for degree of uncertainty, and sensitivity and specificity adjusted. Criteria for evaluating VA performance in generating true proportional mortality were applied. RESULTS: Verbal autopsy produced accurate CSMFs for nine causes in different age groups: birth asphyxia; intrauterine complications; pneumonia; HIV/AIDS; malaria (adults); tuberculosis; cerebrovascular diseases; injuries and direct maternal causes. Results for 20 other causes approached the threshold for good performance. CONCLUSIONS: Verbal autopsy reliably estimated CSMFs for diseases of public health importance in all age groups. Further validation is needed to assess reasons for lack of positive results for some conditions.

Estimating cause-specific mortality from community- and facility-based data sources in the United Republic of Tanzania: options and implications for mortality burden estimates.

OBJECTIVE: To compare mortality burden estimates based on direct measurement of levels and causes in communities with indirect estimates based on combining health facility cause-specific mortality structures with community measurement of mortality levels. METHODS: Data from sentinel vital registration (SVR) with verbal autopsy (VA) were used to determine the cause-specific mortality burden at the community level in two areas of the United Republic of Tanzania. Proportional cause-specific mortality structures from health facilities were applied to counts of deaths obtained by SVR to produce modelled estimates. The burden was expressed in years of life lost. FINDINGS: A total of 2884 deaths were recorded from health facilities and 2167 recorded from SVR/VAs. In the perinatal and neonatal age group cause-specific mortality rates were dominated by perinatal conditions and stillbirths in both the community and the facility data. The modelled estimates for chronic causes were very similar to those from SVR/VA. Acute febrile illnesses were coded more specifically in the facility data than in the VA. Injuries were more prevalent in the SVR/VA data than in that from the facilities. CONCLUSION: In this setting, improved International classification of diseases and health related problems, tenth revision (ICD-10) coding practices and applying facility-based cause structures to counts of deaths from communities, derived from SVR, appears to produce reasonable estimates of the cause-specific mortality burden in those aged 5 years and older determined directly from VA. For the perinatal and neonatal age group, VA appears to be required. Use of this approach in a nationally representative sample of facilities may produce reliable national estimates of the cause-specific mortality burden for leading causes of death in adults.

Cost and results of information systems for health and poverty indicators in the United Republic of Tanzania.

OBJECTIVE: To examine the costs of complementary information generation activities in a resource-constrained setting and compare the costs and outputs of information subsystems that generate the statistics on poverty, health and survival required for monitoring, evaluation and reporting on health programmes in the United Republic of Tanzania. METHODS: Nine systems used by four government agencies or ministries were assessed. Costs were calculated from budgets and expenditure data made available by information system managers. System coverage, quality assurance and information production were reviewed using questionnaires and interviews. Information production was characterized in terms of 38 key sociodemographic indicators required for national programme monitoring. FINDINGS: In 2002-03 approximately US$ 0.53 was spent per Tanzanian citizen on the nine information subsystems that generated information on 37 of the 38 selected indicators. The census and reporting system for routine health service statistics had the largest participating populations and highest total costs. Nationally representative household surveys and demographic surveillance systems (which are not based on nationally representative samples) produced more than half the indicators and used the most rigorous quality assurance. Five systems produced fewer than 13 indicators and had comparatively high costs per participant. CONCLUSION: Policy-makers and programme planners should be aware of the many trade-offs with respect to system costs, coverage, production, representativeness and quality control when making investment choices for monitoring and evaluation. In future, formal cost-effectiveness studies of complementary information systems would help guide investments in the monitoring, evaluation and planning needed to demonstrate the impact of poverty-reduction and health programmes.

Sample registration of vital events with verbal autopsy: a renewed commitment to measuring and monitoring vital statistics.

Registration of births, recording deaths by age, sex and cause, and calculating mortality levels and differentials are fundamental to evidence-based health policy, monitoring and evaluation. Yet few of the countries with the greatest need for these data have functioning systems to produce them despite legislation providing for the establishment and maintenance of vital registration. Sample vital registration (SVR), when applied in conjunction with validated verbal autopsy procedures and implemented in a nationally representative sample of population clusters represents an affordable, cost-effective, and sustainable short- and medium-term solution to this problem. SVR complements other information sources by producing age-, sex-, and cause-specific mortality data that are more complete and continuous than those currently available. The tools and methods employed in an SVR system, however, are imperfect and require rigorous validation and continuous quality assurance; sampling strategies for SVR are also still evolving. Nonetheless, interest in establishing SVR is rapidly growing in Africa and Asia. Better systems for reporting and recording data on vital events will be sustainable only if developed hand-in-hand with existing health information strategies at the national and district levels; governance structures; and agendas for social research and development monitoring. If the global community wishes to have mortality measurements 5 or 10 years hence, the foundation stones of SVR must be laid today.

Is it time to reassess the categorization of disease burdens in low-income countries?

The classification of disease burdens is an important topic that receives little attention or debate. One common classification scheme, the broad cause grouping, is based on etiology and health transition theory and is mainly concerned with distinguishing communicable from noncommunicable diseases. This may be of limited utility to policymakers and planners. We propose a broad care needs framework to complement the broad cause grouping. This alternative scheme may be of equal or greater value to planners. We apply these schemes to disability-adjusted life year estimates for 2000 and to mortality data from Tanzania. The results suggest that a broad care needs approach could shift the priorities of health planners and policymakers and deserves further evaluation.