Patient perspectives on chronic kidney disease and decision-making about treatment. Discourse of participants in the French CKD-REIN cohort study

BACKGROUND: Little is known about psychological issues in patients with chronic kidney disease (CKD) facing transition to kidney failure and the involvement of their family in decision-making about kidney replacement therapy (KRT). This study investigated patients’ experience of their illness, their views on KRT choice and their perception of the influence of their relatives. METHODS: We conducted a qualitative study nested in the CKD-REIN prospective cohort study which included non-dialysis CKD patients from 40 nationally representative nephrology clinics. Among 1555 patients who returned a self-administered questionnaire, we used purposive sampling to select 50 participants who underwent semi-structured phone interviews with a psychologist. RESULTS: The patients' mean age was 62.2 ± 12 years, 42% were women, and 68% had CKD stage 4–5. The analysis yielded four lexical classes: “illness rhythm”, “considering dialysis”, “family and transplantation”, and “disease, treatment choice and introspection”. When experiencing few or mild symptoms, patients tended to avoid thinking about CKD, for the prospect of dialysis was the most stressful part of their experience. Surprisingly, the importance of family appeared when they talked about transplantation decision-making, but not about choice of dialysis modality. CONCLUSIONS: Cognitive avoidance seems common in patients with advanced CKD. Transplantation and dialysis decision-making appear to be two distinct processes, with different levels of family involvement. More research is needed to better understand the frequency and impact of cognitive avoidance on patients’ well-being and decision-making. GRAPHIC ABSTRACT: [Image: see text] SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s40620-022-01345-6.