Kidney Week

Abstract: FR-PO1146

Timing of Dialysis Education and Patients’ and Families’ Preferences in Children with CKD

Session Information

• Pediatric Nephrology - I
  October 26, 2018 | Location: Exhibit Hall, San Diego Convention Center
  Abstract Time: 10:00 AM - 12:00 PM

Category: Pediatric Nephrology

• 1600 Pediatric Nephrology

Authors

• Hogan, Julien, Emory University , Atlanta, Georgia, United States

Julien Hogan,

• Li, Runze, Emory University , Atlanta, Georgia, United States

Runze Li,

• Arenson, Michael, Emory University , Atlanta, Georgia, United States

Michael Arenson,

• Patzer, Rachel E., Emory Transplant Center, Atlanta, Georgia, United States

Rachel E. Patzer,

• Greenbaum, Larry A., Emory University , Atlanta, Georgia, United States

Larry A. Greenbaum,

Background

There is no strong evidence favoring PD or HD in children; it is recommended that patients actively participate in the choice of dialysis modality. The first step for including patients in the decision-making process is to provide them with information on dialysis modalities. However, there is currently limited data on the timing of RRT education in children with CKD and on families’ and patients’ preferences.

Methods

The CKiD study is a prospective cohort study that enrolled patients 1–16 yrs with an eGFR of 30–90 mL/minute/1.73 m². Clinical data and laboratory data are collected annually. Patients and families are asked at baseline and annually about the information received on dialysis modalities and their preferred dialysis modality. Logistic regression was used to study factors associated with education status.

Results

240/370 patients reported not having received any information on RRT prior to inclusion in the cohort. Patients informed at baseline were more likely to have advanced CKD; there was a trend toward a lower probability of information in African American patients or if no family history of CKD. There was no association between CKD duration and the probability of information on RRT. Among the 94 patients who discussed dialysis with their provider during follow-up, 69 (73%) had no preference between PD and HD. Among them, 22 had repeated assessment of their preference; 5 decided on HD, 3 on PD. CKD progression was the only factor associated with change in modality preference. 118 patients discussed transplantation with their provider during follow-up; 23 discussed only deceased donor transplantation, 3 only living donor, 22 both options and 70 reported not being informed of donor sources.

Conclusion

Patient and family self-reported prevalence of education on RRT is low. Starting education on RRT at earlier CKD stages and focusing on populations reporting a low level of information such as African American patients and patients with no familial history of kidney disease may improve education rates. Moreover, the extremely low rate of selecting a dialysis modality is very concerning and could lead to less thoughtful decision-making when patients approach ESRD. Further studies are needed to develop educational interventions and assess their ability to help the patients and families choose their dialysis modality.