Improving patient-centered dialysis care: Focusing on patients and their caregivers

Abstract

Yearly, around 1700 patients with kidney failure in the Netherlands initiate dialysis as a form of kidney replacement therapy. Dialysis profoundly affects both patients’ and their informal caregivers’ lives. The overarching aim of this thesis is to improve our understanding of outcomes of dialysis patients and their informal caregivers. The first part of this thesis focuses on gaining insight into how patient-reported and clinical outcomes are affected by different dialysis modalities (especially home versus in-center dialysis modalities) and by self-management barriers of dialysis patients. The second part of this thesis focuses on gaining insight into informal caregiver outcomes in dialysis care and how informal caregivers want to be supported. The first part of this thesis shows that patient-reported and clinical outcomes are comparable across different types of dialysis. It also shows that self-management barriers have a negative impact on health-related quality of life and symptom burden. A strong focus on shared decision-making and tailored self-management support is therefore essential to improve outcomes of dialysis patients. The second part of this thesis shows that informal caregivers play an important, yet often overlooked, role in dialysis care. The well-being of informal caregivers is closely intertwined with that of dialysis patients, and the outcomes of informal caregivers deteriorate after dialysis initiation. This underscores the need to recognize informal caregivers as part of the healthcare team and to provide them with timely and tailored support throughout the course of the illness.