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Longitudinal qualitative study explores treatment burden in live donor kidney transplantation, indicating the need for improved patient support.
Background Pre-emptive live donor kidney transplantation (LDTx) offers the best outcomes for people with advanced chronic kidney disease (CKD), yet only 6.6% initiate kidney replacement therapy (KRT) with a transplant in the UK. Patients under consideration for LDTx are asked to enact complex management plans. Treatment burden is defined as the effects of healthcare workload, and the capacity a person has to manage that workload, on wellbeing. The aim of this study is to explore the treatment burdens associated with LDTx and how they evolve over time. Methods Serial semi-structured interviews were conducted with 23 patients under consideration for LDTx over the initial 12 months of KRT. The study population includes those that have undergone pre-emptive transplantation and those who have been considered for LDTx but started KRT by a different modality. Data were analysed with a framework analysis informed by Normalization Process Theory, Theory of Patient Capacity and Burden of Treatment Theory. Results Treatment burden in LDTx includes both the general treatment burden of managing CKD5 and imminent transition onto KRT, and treatment burdens distinct to LDTx. Three distinct types of treatment burden specific to LDTx were identified: the emotional burden of accepting a living donation, the burden of managing uncertainty, and the organizational burden of navigating the healthcare system. Conclusions Patients describe significant treatment burdens distinctly associated with LDTx. Better understanding of these burdens could lead to the development of interventions that minimize treatment burden, improve patient experience and improve rates of pre-emptive live donor transplantation
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Jones et al. (2025) studied this question.
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