Understanding the kidney replacement therapy decision-making process

Patients with late-stage chronic kidney disease (CKD) engage in life changing kidney replacement therapy (KRT) option(s) decision-making. This study aimed to do the following using journey mapping: determine new interventions to improve KRT decision-making and optimal timing of these interventions and to assess differences across CKD groups with regards to KRT decision-making. This was a primarily qualitative cross-sectional cohort study of adults in one of the following 5 CKD groups: CKD 5 decided on KRT option, CKD 4 decided, CKD 4&5 undecided, post-transplant CKD 4&5, and CKD 3b-5 initially, who start unplanned dialysis in hospital requiring outpatient dialysis. CKD patients enrolled to participate in individual journey mapping sessions. Nephrology providers participated in focus groups. All participants completed demographic surveys. Individual journey maps were aggregated by process steps and emotional journeys by CKD group. Theme coding for journey maps and focus groups was performed by two study team members. A patient focus group was conducted for review of group journey map accuracy. Semi-structured interview guides were created for journey maps and focus groups. Descriptive quantitative statics were performed. Forty-two patients participated in journey mapping; ten in the CKD 5 decided group and eight each in the other four groups. There were eleven provider participants from seven centers. Identified interventions for improvement were: assistance with shock/grief after the nephrologist recommends making a KRT decision, talking with peers to obtain patient perspectives on living with different KRT options, learning the kidney disease progression risk at the 2nd or 3rd nephrology visit and learning about all KRT options regardless of candidacy. Themes that emerged from provider focus groups were similar to those obtained with patient journey mapping. There were no significant differences in demographic trends in the suggested interventions ascertained for improving the KRT decision-making process. KRT decision-making journeys were similar across groups; thus a tailored approach by CKD group is not warranted. Key intervention approaches to improve KRT decision-making experience were identified for testing in future prospective studies.