Children on dialysis as well as renal transplanted children report severely impaired health-related quality of life

Abstract

ObjectivesTo assess health-related quality of life (HRQoL) across three renal replacement therapy modalities (preemptive transplant, non-preemptive transplant, and dialysis) in comparison with the healthy norm and other chronic health conditions, and to explore related patient factors.Study designAll prevalent end-stage renal disease (ESRD) patients aged 8–18 years who spent at least 6 months on their current treatment modality in the Netherlands, Belgium, and part of Germany were approached to complete the Pediatric Quality of Life Inventory 4.0 (PedsQL™) questionnaire. We determined the differences between groups on PedsQL™ mean scores, the proportion of children with an impaired HRQoL (≥ 1 SD lower than the healthy norm), the proportion of problems on individual items of the PedsQL™, and the effect of time on current treatment. Linear regression models were used to explore determinants of HRQoL.Results192 out of 278 patients (20% preemptive transplant, 58% non-preemptive transplant, 22% dialysis) filled in the PedsQL™ (response rate 69%). Independent of treatment modality, patients had significantly lower mean scores and consequently higher proportions of impaired HRQoL on almost all domains compared to the healthy norm and other chronic health conditions. Patients with a preemptive transplant only reported higher scores on physical health compared to the other treatment modalities. Having comorbidities was the most important determinant associated with lower HRQoL scores.ConclusionDialysis and renal transplantation both have a severe impact on the HRQoL of children with ESRD. Physicians should be aware of this continuous burden. Furthermore, to develop tailored interventions for children with ESRD, qualitative studies are needed to gain more insight in the determinants of HRQoL in the different treatment modalities.

Health‐related quality of life changes following renal transplantation in children

“…Our findings support a previous report suggesting adaptation to kidney transplant may take up to12 months, but differ from previous cross‐sectional studies, which did not find significant differences in total HRQoL scores between dialysis and transplant groups . This may be explained in part by higher post‐transplant scores among our cohort.…”

“… These findings are consistent with the findings of Olausson et al who found most pediatric transplant recipients were of the opinion that they lived a normal life. Splinter et al found lower HRQoL scores among transplant recipients who received transplant >1 year ago, suggesting recipient HRQoL may fall after the first year. Our findings of clinically significant improvement in recipient Worry subscale score contrasts with the qualitative findings reported by Tong et al who found continued significant barriers related to fear and uncertainty over the future among adolescent recipients following kidney transplant.…”

“…In contrast, data from studies utilizing the disease‐specific PedsQL 3.0 ESRD have revealed persistence of problems for transplant recipients including concerns about physical appearance and problems attributed to kidney issues (eg “I am embarrassed that my medicines will change the way I look”) and indicate a lack of clear improvement in HRQoL following kidney transplant . While other quantitative studies show parents of transplant recipients score their child's HRQoL higher than parents of children on dialysis, there has not been a consistent difference noted between children's reported HRQoL between dialysis and transplantation . Further, these studies did not include children in the first 6 months after transplant, which is a time period when significant changes in HRQoL could be expected to occur .…”

Everyday life experiences in families with a child with kidney disease

“…Future prospects regarding schooling and further education are poor if they are in need of dialysis—which is time consuming and often produces side effects. Significantly reduced quality of life is found among children with ESKD (Francis et al ), and in health‐related quality of life at all stages of chronic kidney disease (CKD) (Moreira et al ; Splinter et al ).…”

The significance of relationships and dynamics in families with a child with end‐stage kidney disease: A qualitative study

“…Children with ESKD need renal replacement therapy or transplantation to survive, and their death rate remains 30-fold higher than for healthy children (Chong et al, 2017;McDonald & Craig, 2004). Thus, children with ESKD face lifelong increases in morbidity and mortality, together with reduced quality of life (Francis et al, 2019) and health-related quality of life (Moreira, Bouissou Morais Soares, Teixeira, Simões e Silva, & Kummer, 2015;Splinter et al, 2018).…”