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Open Access Highly Accessed Research article

Verbal autopsy as a tool for identifying children dying of sickle cell disease: a validation study conducted in Kilifi district, Kenya

Carolyne Ndila12*, Evasius Bauni12, Vysaul Nyirongo3, George Mochamah1, Alex Makazi1, Patrick Kosgei1, Gideon Nyutu1, Alex Macharia1, Sailoki Kapesa1, Peter Byass245 and Thomas N Williams126

Author Affiliations

1 Kenya Medical Research Institute (KEMRI)/Wellcome Trust Programme, Centre for Geographic Medicine Research-Coast, P.O Box 230, Kilifi, Kenya

2 INDEPTH Network of Demographic Surveillance Sites, Accra, Ghana

3 United Nation Statistics Division, New York, USA

4 Umeå Centre for Global Health Research, Department of Public Health and Clinical Medicine, Umeå University, 90187 Umeå, Sweden

5 WHO Collaborating Centre for Verbal Autopsy, Umeå University, 90187 Umeå, Sweden

6 Department of Medicine, Imperial College, London W21NY, UK

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BMC Medicine 2014, 12:65  doi:10.1186/1741-7015-12-65

Published: 22 April 2014

Abstract

Background

Sickle cell disease (SCD) is common in many parts of sub-Saharan Africa (SSA), where it is associated with high early mortality. In the absence of newborn screening, most deaths among children with SCD go unrecognized and unrecorded. As a result, SCD does not receive the attention it deserves as a leading cause of death among children in SSA. In the current study, we explored the potential utility of verbal autopsy (VA) as a tool for attributing underlying cause of death (COD) in children to SCD.

Methods

We used the 2007 WHO Sample Vital Registration with Verbal Autopsy (SAVVY) VA tool to determine COD among child residents of the Kilifi Health and Demographic Surveillance System (KHDSS), Kenya, who died between January 2008 and April 2011. VAs were coded both by physician review (physician coded verbal autopsy, PCVA) using COD categories based on the WHO International Classification of Diseases 10th Edition (ICD-10) and by using the InterVA-4 probabilistic model after extracting data according to the 2012 WHO VA standard. Both of these methods were validated against one of two gold standards: hospital ICD-10 physician-assigned COD for children who died in Kilifi District Hospital (KDH) and, where available, laboratory confirmed SCD status for those who died in the community.

Results

Overall, 6% and 5% of deaths were attributed to SCD on the basis of PCVA and the InterVA-4 model, respectively. Of the total deaths, 22% occurred in hospital, where the agreement coefficient (AC1) for SCD between PCVA and hospital physician diagnosis was 95.5%, and agreement between InterVA-4 and hospital physician diagnosis was 96.9%. Confirmatory laboratory evidence of SCD status was available for 15% of deaths, in which the AC1 against PCVA was 87.5%.

Conclusions

Other recent studies and provisional data from this study, outlining the importance of SCD as a cause of death in children in many parts of the developing world, contributed to the inclusion of specific SCD questions in the 2012 version of the WHO VA instruments, and a specific code for SCD has now been included in the WHO and InterVA-4 COD listings. With these modifications, VA may provide a useful approach to quantifying the contribution of SCD to childhood mortality in rural African communities. Further studies will be needed to evaluate the generalizability of our findings beyond our local context.

Keywords:
Sickle cell disease; Verbal autopsy; Agreement coefficient; Child mortality; Kenya