Medicine & Health

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  • (2023) Talbot, Benjamin
    Chronic kidney disease (CKD) affects more than 1/10 people worldwide with a disproportionately high burden in disadvantaged communities. As CKD severity increases, the associated morbidity, mortality and treatment costs also increase. In the case of kidney failure, the most severe form of CKD, the costs of treatment, including life prolonging treatment with dialysis or kidney transplant, are often unaffordable in under-resourced healthcare settings. Data has been central to improving the outcomes of patients with CKD, but there continue to be important data gaps, especially in low- and lower-middle-income countries (LLMICs). In order to more comprehensively understand the burden of kidney disease, it is necessary to overcome the many challenges to data collection which exist globally. To explore how this could be achieved, this thesis examines how four different data sources can contribute to addressing gaps in understanding CKD. Firstly, the role of kidney replacement therapy (KRT) registries in LLMICs were assessed through a review of the literature and explored further by implementing a dialysis registry in Fiji. Secondly, extending data collection of a randomised controlled trial to examine how differing practice patterns across regions might impact outcomes was assessed through analysis of the extended follow-up of the Study of Heart and Renal Protection (SHARP). Thirdly, the role of administrative data was explored through a literature review and through two novel data linkage analyses. Lastly, semi-structured interviews were conducted with patients and clinicians to understand their perspectives on remote patient monitoring (RPM), a novel approach to patient data collection for dialysis treatment. The analyses examining the role of focused KRT registries in LLMICs and the utility of long-term follow-up of clinical trials to compare outcomes between regions suggest that whilst useful at describing the burden of disease and treatment, these data sources are unlikely to be central to solving major knowledge gaps due to their cost and complexity. The use of administrative data and data linkage offer an opportunity for efficient data collection in CKD and may represent a cost-effective investment for developing healthcare systems in the future. Novel data capture techniques, such as RPM, may improve CKD data collection, but a thorough understanding of the perspectives of user populations should be considered before their wider implementation.