1. Timing of patient-reported renal replacement therapy planning discussions by disease severity among children and young adults with chronic kidney disease
- Author
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Yunwen Xu, Jeffrey M. Saland, Susan L. Furth, Julien Hogan, Craig S. Wong, Bradley A. Warady, Larry A. Greenbaum, and Derek K. Ng
- Subjects
Male ,Nephrology ,medicine.medical_specialty ,Pediatrics ,Time Factors ,Adolescent ,medicine.medical_treatment ,030232 urology & nephrology ,Disease ,030204 cardiovascular system & hematology ,urologic and male genital diseases ,Severity of Illness Index ,Article ,Cohort Studies ,Nephrologists ,Young Adult ,03 medical and health sciences ,0302 clinical medicine ,Recall bias ,Internal medicine ,medicine ,Humans ,Longitudinal Studies ,Prospective Studies ,Renal replacement therapy ,Renal Insufficiency, Chronic ,Young adult ,Child ,Dialysis ,Physician-Patient Relations ,business.industry ,Communication ,Patient Preference ,medicine.disease ,female genital diseases and pregnancy complications ,Renal Replacement Therapy ,Pediatrics, Perinatology and Child Health ,Cohort ,Disease Progression ,Quality of Life ,Female ,Self Report ,business ,Decision Making, Shared ,Glomerular Filtration Rate ,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 health care provider?” at annual study visits. Responses were linked to the previous year CKD risk stage based on GFR and proteinuria. Repeated measures 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: 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.
- Published
- 2020