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.

A Systematic Literature Review of the Epidemiology, Health-Related Quality of Life Impact, and Economic Burden of Immunoglobulin A Nephropathy

“…Health-related quality of life: Two of the extracted QoL studies were retrospective, 13,50 1 was a single-center prospective and observational study, 51 4 were patient surveys, [52][53][54][55] and 1 was a validity study of a PRO assessment. 56 These studies demonstrated that, even prior to progression to ESRD, patients with IgAN experience considerable symptom burden.…”

“…56 These studies demonstrated that, even prior to progression to ESRD, patients with IgAN experience considerable symptom burden. The Short Form 36 Health Survey Questionnaire (SF-36) was used in two studies 51,54 and other HRQoL instruments such as the Patient-Reported Outcomes Measurement Informative System (PROMIS), 13 Pediatric Quality of Life Inventory (PedsQL), 55 Hamilton Depression Rating Scale (HAMD), 54 Beck Depression Inventory-II (BDI-II), Eysenck Personality Questionnaire (EPQ), Quality of Life Index (QLI), and Life Satisfaction Index (LSI), 51 were used in one study each.…”

“…54 A South African study of patients aged ≤18 years (mean age 14.4 years) with ESRD receiving dialysis (1/27 patients had IgAN) reported HRQoL scores measured by PedsQL that were significantly lower (P<0.05) than those of healthy children. 55 Two studies examined the impact of lifestyle modification on HRQoL. A Japanese patient survey (n=81) identified no direct relationship between exercise intensity and decreasing levels of proteinuria, estimated glomerular filtration rate, or stress among outpatients with IgAN, while dietary improvements were associated with increased HRQoL (using an unspecified questionnaire).…”

Challenges Facing Children on Chronic Peritoneal Dialysis in South Africa

“…The development of ESKD is a life-changing tragedy for the child, the family, and the community (15). The child's quality of life will be adversely affected (16) and many parents will find having a child with CKD “a pervasive and profoundly negative experience.” (17) In addition, having the child present with established ESKD will lead to many significant social, economic, and clinical challenges (18). Wightman and Freeman state that “the decision to initiate or forgo RRT is a difficult one which requires a careful examination of a child's best interests and the benefits and burdens of therapy for both the child and his or her family.” (19) However, the late presentation of ESKD, so common in South Africa, results in insufficient time for the family to prepare mentally and financially for the approaching challenge, and there is inadequate time for the medical team to evaluate the suitability of the family for this life-changing and life-long course of treatment before needing to initiate emergency dialysis.…”

“…The development of ESKD is a life-changing tragedy for the child, the family, and the community (15). The child's quality of life will be adversely affected (16) and many parents will find having a child with CKD "a pervasive and profoundly negative experience." (17) In addition, having the child present with established ESKD will lead to many significant social, economic, and clinical challenges (18).…”