Experience of Chronic Kidney Disease and Perceptions of Transplantation by Sex.

ABSTRACT

Importance The pathway to kidney transplantation (KT) begins with the patient's acceptance of this surgical procedure after discussion with the nephrologist. The patients' perceptions of the disease and of KT may influence their willingness to undergo transplantation. Objective: To describe patients' experiences of kidney disease and their perceptions of KT and the nephrologists' perceptions of the patient experience. Design, Setting, and Participants: This qualitative study collected data through semistructured interviews with patients with chronic kidney disease and nephrologists in the Bretagne, Île-de-France and Normandie regions, France. Researchers involved in the study in each region purposely selected 99 patients with chronic kidney disease who initiated dialysis in 2021, based on their age, sex, dialysis facility ownership, and also 45 nephrologists, based on their sex and years of experience. Data analysis was performed from January to October 2023. Main Outcomes and Measures: Themes were identified using inductive thematic analysis. Specific characteristics of men and women as well as the nephrologist's views for each theme were described. Results: This study included 42 men and 57 women (56 [57%] aged 60 years or older) who started dialysis in 2021 and 45 nephrologists (23 women and 22 men). Six major themes were identified (1) burden of chronic kidney disease on patients and their families, (2) health care professional-patient relationship and other factors that modulate chronic kidney disease acceptance, (3) dialysis perceived as a restrictive treatment, (4) patients' representation of the kidney graft, (5) role of past experiences in KT perception, and (6) dualistic perception of KT. In some cases, women and nephrologists indicated that women's perceptions and experiences were different than men's; for example, the disease's psychological impact and the living donor KT refusal were mainly reported by 8 women. Conclusions and Relevance Patients' past experience of chronic kidney disease in general and of KT in particular, as well as their relationship with their family and nephrologist, were substantial determinants of KT perception in this qualitative study. Targeted policies on these different factors might help to improve access to KT, and more research is needed to understand whether there are sex-based disparities.