Health-related quality of life in children and adolescents with end-stage renal disease receiving dialysis in Johannesburg

Abstract

Background. Limitations in daily activities can have a major impact on the quality of life in children and adolescents. Long-term dialysis tends to restrict children from carrying out similar activities to those of their peers. 

Objective. To analyse the health-related quality of life of children and adolescents with end-stage renal disease on dialysis in Johannesburg. 

Methods. A hospital-based, cross-sectional study which assessed the health-related quality of life (HRQOL) of patients undergoing haemodialysis (HD), automated peritoneal dialysis (APD) and continuous ambulatory peritoneal dialysis (CAPD) using the Pediatric Quality of Life Inventory (PedsQL 3.0) and end-stage renal disease (ESRD) module as the instrument. The instrument is a questionnaire comprising 7 domains with a total of 34 questions/items. Child reports as well as parent proxy reports were obtained. Questionnaires were administered to all patients and parents/caregivers of children on all forms of chronic dialysis. 

Results. Twenty-seven children and adolescents were studied. The mean (standard deviation (SD)) age of the study participants was 14.4 (4.8) years (range 5 - 25). Fourteen patients were on HD while 13 were on peritoneal dialysis (8 on APD and 5 on CAPD). Those on HD were significantly older, with a mean (SD) age of 16.6 (3.2) years, compared with the mean (SD) age of those on PD, which was 12.1 (5.3) years (p=0.007). Moreover, those on HD had been on dialysis for a longer period of time, with a mean (SD) period of 4.5 (3.3) years, compared with those on PD who had been on dialysis for a mean (SD) duration of 1.7 (0.8) years (p=0.006). The HRQOL was lower in most domains in the HD group compared with the PD group. Among the patients on PD, the HRQOL scores were lower in the APD group compared with the CAPD group (p>0.05). The ratings by the parent proxies were higher than those reported by the children themselves in most domains. When compared with the population mean HRQOL scores derived from a healthy paediatric population, the mean HRQOL scores of the children with ESRD on dialysis were significantly lower for both child (t=–11.1; p=0.001) and parent proxy reports (t=–7.2; p=0.001). 

Conclusion. HRQOL is low in children with ESRD receiving chronic dialysis. It tends to be much lower in children on HD when compared with those on PD. PD appears to be more acceptable to children and parents/caregivers than HD.