Quality of life in children with chronic kidney disease - patient and caregiver assessments

Background. Children with chronic kidney disease (CKD) require strict dietary and lifestyle modifications, however, there is little information on their quality of life. Our objective was to compare health-related quality of life (HRQOL) in children with different stages of CKD to each other and to a control population. Methods. A cross-sectional assessment of HRQOL for physical, emotional, social and school domains was performed using the PedsQL (TM) Generic Core Scale. Data were collected from 20 children with chronic renal insufficiency (CRI; creatinine > 200 mu mol/l), 12 on maintenance haemodialysis or peritoneal dialysis (DIAL) and 27 with renal transplants (TX). Caregiver proxy reports were obtained for CRI (n = 20), DIAL (n = 17) and TX (n = 21). Between-group differences were assessed with ANOVA for the CKD groups; t-tests compared our CKD samples with controls. Results. Children with CKD scored lower than the controls in all subscales, however, only TX compared with controls was significant (P < 0.02). DIAL children scored equal to or higher than the TX group in all domains. Analysis of covariance with number of medications as covariate yielded a significant result for the physical subscale (F = 8.95, df = 3, 53, P = 0.004). Proxy caregiver scores were lower than patient scores in all four domains. Conclusions. Children with CKD rate their HRQOL lower than the healthy controls do. It may be reassuring to caregivers that children on dialysis rate their HRQOL higher than would be expected. However, it is of some concern that caregiver perception of improved HRQOL following transplantation was not shared by their children in the present study.