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Abstract
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.
