Understanding non-communicable diseases: combining health surveillance with local knowledge to improve rural primary health care in South Africa

ABSTRACT

Background: NCDs are non-infectious, long-term conditions that account for 40 million deaths per annum. 87% of premature NCD mortality occurs in low- and middle-income countries.

Objective: The aims were:develop methods to provide integrated biosocial accounts of NCD mortality; and explore the practical utility of extended mortality data for the primary health care system.

Methods: We drew on data from research programmes in the study area. Data were analysed in three steps: [a]analysis of levels, causes and circumstances of NCD mortality [n = 4,166] from routine census updates including Verbal Autopsy and of qualitative data on lived experiences of NCDs in rural villages from participatory research; [b] identifying areas of convergence and divergence between the analyses; and [c]exploration of the practical relevance of the data drawing on engagements with health systems stakeholders.

Results: NCDs constituted a significant proportion of mortality in this setting [36%]. VA data revealed multiple barriers to access in end-of-life care. Many deaths were attributed to problems with resources and health systems [21%;19% respectively]. The qualitative research provided rich complementary detail on the processes through which risk originates, accumulates and is expressed in access to end-of-life care, related to chronic poverty and perceptions of poor quality care in clinics. The exploration of practical relevance revealed chronic under-funding for NCD services, and an acute need for robust, timely data on the NCD burden.

Conclusions: VA data allowed a significant burden of NCD mortality to be quantified and revealed barriers to access at and around the time of death. Qualitative research contextualised these barriers, providing explanations of how and why they exist and persist. Health systems analysis revealed shortages of resources allocated to NCDs and a need for robust research to provide locally relevant evidence to organise and deliver care. Pragmatic interdisciplinary and mixed method analysis provides relevant renditions of complex problems to inform more effective responses.

KEYWORDS:

• Non-communicable diseases
• verbal autopsy
• participatory research
• civil registration and vital statistics
• South Africa

Responsible Editor Stig Wall, Umeå University, Sweden

Responsible Editor Stig Wall, Umeå University, Sweden

Acknowledgments

The authors would also like to acknowledge the field staff at the MRC/Wits Agincourt unit, particularly Ms Rirhandzu Khozsa, and Dr Kerstin Edin from the Umeå Centre for Global Health Research, Umeå University who made important contributions to the fieldwork.

Author contributions

EC: performed the analysis and drafted the manuscript;

LD: conceived of the study and study design, designed and led data collection, supervised analysis, drafted the manuscript;

RT: contributed to data collection, supervised analysis, and commented on the manuscript;

RGW: contributed to study design, provided organisational support, oversaw data collection, contributed to analysis, and commented on the manuscript;

SW: contributed to feedback and health system discussion and commented on the manuscript.

MVW: contributed to health system discussion and commented on the manuscript.

SA: commented on the manuscript.

PB: oversaw study design, data collection and analysis and commented on the manuscript

Disclosure statement

No potential conflict of interest was reported by the authors.

Ethics and consent

Routine VA surveys in the Agincourt HDSS are approved by the Human Research Ethics Committee [HREC] [Medical] of the University of the Witwatersrand, and informed consent is obtained at the beginning of surveillance and reaffirmed regularly at individual, household and community levels. The participatory research [PHEVA] and health systems engagement protocols were reviewed and approved by HREC and the University of Aberdeen College Ethics Review Board [CERB] [clearances: M121039, M1704115, M171050, M171050 amendment, CERB/2017/4/1457; CERB/2017/9/1518; CERB/2017/9/1518]. Permission was secured from Mpumalanga provincial health authority [MP_201712_003].

Paper context

Deaths due to non-communicable diseases are increasing rapidly in South Africa. They are predicated to be the leading cause of death by 2030. There is a significant shortage of data on vital events due to underfunded and incomplete CRVS systems. This study highlights the added value of pragmatic and plural analytical frameworks for more complete renditions of complex problems. The findings imply the value of conducting interdisciplinary research when considering complex problems, such as NCDs;Department for International Development (DFID)/Medical Research Council (MRC)/Wellcome Trust/Economic and Social Research Council (ESRC) [(MR/N005597/1 and MR/P014844/1).]

Additional information

Funding

This study was funded by the Joint Health Systems Research Initiative from Department for International Development/MRC/Welcome Trust/Economic and Social Research Council (MR/N005597/1 and MR/P014844/1). The work was nested within the South African Medical Research Council / Wits University Rural Public Health and Health Transitions Research Unit, supported by the University of the Witwatersrand and Medical Research Council, South Africa. The Agincourt Health and Socio-Demographic Surveillance System, a node of the South African Population Research Infrastructure Network (SAPRIN), is supported by the National Department of Science and Innovation.