Quality of life for dialysis patients: Projects and tools for care teams (DialiCare)

Abstract

Chronic kidney disease and dialysis have a major impact on patients’ quality of life, affecting their physical, psychological, and social well-being. The DialiCare project, conducted in partnership with an industry stakeholder and health care professionals involved in dialysis care, aims to address these challenges through a collaborative, patient-centered approach. Structured in two phases, the project first identified the priority needs of patients and health care professionals through surveys and regional working groups. Various project proposals were then submitted to a jury made up of a patient association (France Rein), two professional associations (ANFIPA and AFIDTN), and health care professionals who had participated in the initiative. Three projects were selected. The second phase led to the cocreation of three innovative educational tools: the “Roue du prurit” (Itch Wheel), the “Évadez-vous” (“Escape”) project designed to help patients envision themselves engaging in enjoyable activities, and the “Comment se sentent nos patients” (“How Our Patients Feel”) project, a placemat designed to help patients express their emotions and experiences. These tools aim to improve communication between caregivers and patients, objectify symptoms, and promote patient autonomy. The DialiCare project illustrates the importance of a participatory approach in developing concrete solutions tailored to real-world conditions and capable of sustainably improving the quality of life for dialysis patients.