Transitioning patients with advanced chronic kidney disease to home or in-center dialysis: understanding the experience and quality of life for patients and their caregivers (TRANSIT-CARE)

Quality of life is a priority research outcome for patients with advanced chronic kidney disease. When patients are treated with dialysis, their quality of life is often decreased, with levels considered lower than patients treated for cancer or heart disease. However, we do not know how patient's quality of life changes after start of dialysis in their home or in a hospital. Similarly, we do not know if the health of patients with frailty (loss in physical ability, endurance and strength), evolves differently after start of dialysis at home or in a hospital. TRANSIT-CARE is a 4-year prospective mixed methods study following adult patients with advanced kidney disease (and their caregivers) who progress to dialysis and receive home or hospital dialysis. In this study, we aim to understand the interplay between changes in patients' quality of life, frailty status and the experience of initiating dialysis at home or in a hospital. We will use questionnaires to measure patients' quality of life and tools to evaluate their frailty trajectory over different timepoints before and after dialysis initiation. Caregivers' burden of care and their quality of life will also be assessed. In parallel, we will perform semi-structured interviews with patients and their caregiver before and after dialysis initiation to better understand their experience of preparing for and starting dialysis. TRANSIT-CARE will improve the care of people starting dialysis, both at home and in hospital. Our study will inform stakeholders on which patients and caregivers need additional support and at what time this support is most needed. It will help to design and implement interventions aiming to improve patient's experience of critical the CKD-to-dialysis period.