What is the role of relatives in treatment choice of patients with advanced chronic kidney-disease?

Abstract

Background: Treatment choice between transplantation, dialysis or conservative treatment is a stressful time for patients reaching end-stage kidney disease. It has been shown that family plays an important role during this process but little is known about it. The aim of this study is to explore the role of relatives in the treatment decision-making process in advanced chronic kidney disease (CKD). Methods: Patients with advanced-stage CKD participating in the French cohort CKD-REIN (N=3000) will be proposed to include at least one relative. Two evaluation times are scheduled within a two-year interval. Quantitative part: Participants’ self-perceived quality of life, depression, anxiety, satisfaction with care, family relationships, assertiveness, relatives’ influence on treatment decision and perception of CKD will be measured. Data will be analysed using the Actor-Partner Interdependence Model. Qualitative part: 80 patients and 80 relatives will be interviewed according to several characteristics (age, family status, CKD stage). These individual semi-structured interviews will explore participants’ experience of CKD, family communication regarding illness and involvement in decision-making. A lexicometric analysis will be performed. Expected results: Results should show how patients’ and relatives’ adjustment are related and how relatives take part in the decision-making process according to their characteristics. Current stage of work: Patients have been included in the cohort. Relatives’ recruitment will begin in spring 2017. Discussion: This study will allow us to better understand the factors explaining treatment choice. The results could lead to recommendations to healthcare professionals to better guide patients through this process and improve care in a family approach.