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Pediatric end stage renal disease health-related quality of life differs by modality: a PedsQL ESRD analysis
Stuart L Goldstein1, Nicole M Rosburg, Bradley A Warady
1Texas Children's Hospital, Baylor College of Medicine, 52 6621 Fannin Street, MC 3-2482, Houston, TX 77030, USA. stuartg@bcm.tmc.edu
Insights
Parents perceive higher health-related quality of life (HRQOL) in pediatric kidney transplant patients compared to dialysis patients. However, children undergoing transplantation reported similar HRQOL, except for better family and peer interactions.
Area of Science:
- Pediatric Nephrology
- Health Outcomes Research
- Quality of Life Measurement
Background:
- The PedsQL 3.0 End Stage Renal Disease (ESRD) Module was validated to assess health-related quality of life (HRQOL) in pediatric patients with ESRD.
- Understanding HRQOL differences based on treatment modality (dialysis vs. transplant) is crucial for optimizing care.
Purpose of the Study:
- To compare HRQOL between pediatric patients with ESRD on maintenance dialysis and those with a renal transplant, using parent and patient self-reports.
- To evaluate the PedsQL 3.0 ESRD Module's utility in identifying modality-specific challenges.
Main Methods:
- Cross-sectional study utilizing the PedsQL 3.0 ESRD Module.
- Data collected from parents and pediatric patients (children and adolescents) with ESRD on dialysis or post-transplant.
- Analysis of HRQOL differences across ESRD Module Scales between the two treatment groups.
Main Results:
- Parents reported significantly higher child HRQOL for renal transplant recipients than for dialysis patients across most domains.
- Pediatric transplant recipients reported comparable HRQOL to dialysis patients, except for significantly better family and peer interactions.
- Effect sizes for parent-reported differences were mostly medium, while patient-reported differences were small and generally non-significant.
Conclusions:
- Parents observe greater HRQOL benefits from renal transplantation compared to dialysis in pediatric ESRD patients.
- Children's self-reported HRQOL differences between transplant and dialysis are less pronounced, highlighting potential discrepancies in perception.
- The PedsQL 3.0 ESRD Module effectively identifies HRQOL challenges related to ESRD and treatment modality in pediatric populations.
Abstract:
We previously validated the 34-item PedsQL 3.0 End Stage Renal Disease (ESRD) Module designed to measure pediatric ESRD-specific health-related quality of life (HRQOL) in children and adolescents receiving maintenance dialysis or with a renal transplant. The study reported here was undertaken to assess for potential HRQOL differences between ESRD modality in children with ESRD and their parents using the PedsQL 3.0 ESRD Module. Parents of patients with a renal transplant reported a significantly higher HRQOL for their children than parents of pediatric patients receiving dialysis on all ESRD Module Scales except the Perceived Physical Appearance Scale, with the majority of the effect sizes in the medium range. Pediatric renal transplant patients self-reported comparable HRQOL to pediatric patients receiving dialysis across the ESRD Module Scales, with the exception of the Family and Peer Interaction Scale, in which pediatric renal transplant patients self-reported significantly higher HRQOL than pediatric patients receiving dialysis. Our cross-sectional data suggest that parents of children with ESRD observe a positive impact from renal transplantation on the majority of HRQOL domains compared to dialysis, whereas children self-report generally non-significant small effect size differences in favor of renal transplantation. These findings suggest that the PedsQL ESRD 3.0 Module may be used to identify ESRD- and modality-specific challenges that impact pediatric patient HRQOL.
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