Exploration of treatment burden during transition onto kidney replacement therapy: A longitudinal qualitative study

People with kidney disease who need to transition onto kidney replacement therapy (KRT) face a life-changing diagnosis. This process involves complex decisions about treatment and a high volume of healthcare work. Little work has been done looking at KRT transition through the lens of treatment burden. This study aims to explore how treatment burden evolves during KRT transition in a population recruited from a large nephrology and kidney transplant unit in Glasgow, Scotland.

Serial in-depth qualitative interviews were conducted with 30 participants across up to three time points, generating 76 interviews. We used a framework analysis informed by Normalisation Process Theory (NPT), Theory of Patient Capacity (TPC) and Burden of Treatment Theory (BoTT) to explore the interaction between workload, capacity, and the system. Five main themes affecting treatment burden arose: engaging personal and social resources to navigate KRT transition, being able to meet the challenges, preparing to enact the healthcare workload, undertaking KRT transition related workload, and the evolution of burden over time.

Transitioning onto KRT is a process that entails a high volume of healthcare workload and significant treatment burden. Experiences of treatment burden are influenced by the nature of the work required; the patient's capacity including physical, psychological, financial and cognitive factors; the capacity of their social network; and the functioning of the healthcare system. Particular focus should be placed on understanding the impact of the healthcare system on experiences of burden, as it represents a potentially modifiable driver of treatment burden that clinicians and healthcare policy-makers can directly influence.