Timing of patient-reported renal replacement therapy planning discussions by disease severity among children and young adults with chronic kidney disease

Abstract

Background: Preparing children with chronic kidney disease (CKD) for renal replacement therapy (RRT) begins with a discussion about transplant and dialysis, but its typical timing in the course of CKD management is unclear. We aimed to describe participant-reported RRT planning discussions by CKD stage, clinical and sociodemographic characteristics, in the Chronic Kidney Disease in Children (CKiD) cohort.

Methods: Participants responded to the question "In the past year, have you discussed renal replacement therapy with your doctor or healthcare provider?" at annual study visits. Responses were linked to the previous year CKD risk stage based on GFR and proteinuria. Repeated measure logistic models estimated the proportion discussing RRT by stage, with modification by sex, age, race, socioeconomic status, and CKD diagnosis (glomerular vs. non-glomerular).

Results: A total of 721 CKiD participants (median age = 12, 62% boys) contributed 2856 person-visits. Proportions of person-visits reporting RRT discussions increased as CKD severity increased (10% at the lowest disease stage and 87% at the highest disease stage). After controlling for CKD risk stage, rates of RRT discussions did not differ by sex, age, race, and socioeconomic status.

Conclusions: Despite participant-reported RRT discussions being strongly associated with CKD severity, a substantial proportion with advanced CKD reported no discussion. While recall bias may lead to underreporting, it is still meaningful that some participants with severe CKD did not report or remember discussing RRT. Initiating RRT discussions early in the CKD course should be encouraged to foster comprehensive preparation and to align RRT selection for optimal health and patient preferences.

Keywords: Chronic kidney disease; End-stage kidney disease; Renal replacement therapy; Transplant.

Figures

Figure 1.

Distribution of person-visits by GFR and proteinuria (UPCR) categories, colored by risk stage (A to F), kidney disease diagnosis (dx) and proportion engaging in a renal replacement therapy (RRT) discussion with their health care provider in the past year. Note: Distribution of person-visits, chronic kidney disease (CKD) diagnosis (dx), and proportions of engaging in a renal replacement therapy (RRT) discussion, colored by CKD risk stage (A to F). Cell coloring defined the six risk stages ordered from the least to the most severe as follows: dark green (risk stage A), light green (risk stage B), gold (risk stage C), tan (risk stage D), salmon (risk stage E), and red (risk stage F). Adapted from Furth SL, Pierce C, Hui WF, White CA, Wong CS, Schaefer F, Wühl E, Abraham AG, Warady BA, Samuels J, Furth S, Neuhaus TJ et al. Estimating Time to ESRD in Children With CKD. American Journal of Kidney Diseases 2018; 71: 783–792.

Figure 2.

Percent of person-visits (n= 2856 person-visits from 721 participants) in which participant reported a renal replacement therapy discussion with their healthcare provider in the previous year, stratified by chronic kidney disease risk stage at the previous study visit. Proportions were estimated by a repeated measures logistic regression model and corresponding 95% confidence intervals were calculated using generalized estimating equations to account for within-individual correlation of responses.

Figure 3.

Percent of person-visits in which participant reported a renal replacement therapy discussion with their healthcare provider in the previous year, stratified by chronic kidney disease risk stage at the previous study visit, and sex (A), age (B), US and Canada (C), race (D), socioeconomic status (E) and kidney disease diagnosis (F). A total of 2856 person-visits were contributed by 721 participants. Proportions and within-risk stage pairwise comparisons were estimated by a repeated measures logistic regression model and corresponding 95% confidence intervals were calculated using generalized estimating equations to account for within-individual correlation of responses.

Figure 4.

Distributions of renal replacement therapy (RRT) modalities considered among person-visits reporting discussing RRT in the previous year, stratified by chronic kidney disease risk stage (n= 2856 person-visits from 721 participants). Each risk group rectangle represents the number of person-visits responding the question, “In the past year, have you discussed renal replacement therapy with your doctor or health care provider?” and the width of the colored bars is proportional to those responding yes to that question. Stacked colors represent the proportion discussing both transplant and dialysis (purple), transplant only (pink), dialysis only (blue) and “don’t know” (gray).