Health-related quality of life of children and adolescents with CKD stages 4-5 and their caregivers.

Background: Renal replacement therapies may affect the quality of life of patients and their primary caregivers (PC).

Methods: This study describes the perception of health-related quality of life (HRQoL) of children/adolescents with CKD stages 4-5, as well as of their PC (n = 64), in comparison to healthy peers and their PC (n = 129), respectively, based on the Peds QL™ 4.0 and Short Form-36 (SF-36) questionnaires and selected biomarkers.

Results: Patients reported a deleterious impact on physical capacity and on social and school activities. A negative influence on emotional aspects was reported by older patients, but not by their PC. Hemodialysis, followed by peritoneal dialysis, had a more negative impact on patients' physical functioning domain. PC HRQol proxy reports differed from those of their children, especially in older patients. PC of both groups presented similar SF-36 scores. An association was demonstrated between the magnitude of treatment target inadequacies, lower specific dominion scores in the patients/PC proxy reports and PC SF-36 general health scores.

Conclusion: The HRQoL of patients with CKD stages 4-5 is negatively affected to different degrees depending on age and treatment modality. The results suggest an association between worsening HRQoL parameters and inadequate control of recognized therapeutic CKD treatment targets.