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

OBJECTIVES: To 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 DESIGN: All 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. RESULTS: 192 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. CONCLUSION: Dialysis 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.

Racial variation in cardiovascular disease risk factors among European children on renal replacement therapy-results from the European Society for Paediatric Nephrology/European Renal Association - European Dialysis and Transplant Association Registry.

BACKGROUND: Racial differences in overall mortality rates have been found in children on renal replacement therapy (RRT). We used data from the European Society for Paediatric Nephrology/European Renal Association - European Dialysis and Transplant Association Registry to study racial variation in the prevalence of cardiovascular disease (CVD) risk factors among European children on RRT. METHODS: We included patients aged <20 years between 2006-13 who (i) initiated dialysis treatment or (ii) had a renal transplant vintage of ≥1 year. Racial groups were defined as white, black, Asian and other. The CVD risk factors assessed included uncontrolled hypertension, obesity, hyperphosphataemia and anaemia. Differences between racial groups in CVD risk factors were examined using generalized estimating equation (GEE) models while adjusting for potential confounders. RESULTS: In this study, 1161 patients on dialysis and 1663 patients with a transplant were included. The majority of patients in both groups were white (73.8% and 79.9%, respectively). The crude prevalence of the CVD risk factors was similar across racial groups. However, after adjustment for potential confounders, Asian background was associated with higher risk of uncontrolled hypertension both in the dialysis group [odds ratio (OR): 1.27; 95% confidence interval (CI): 1.01-1.64] and the transplant group (OR: 1.37; 95% CI: 1.11-1.68) compared with white patients. Patients of Asian and other racial background with a renal transplant had a higher risk of anaemia compared with white patients (OR: 1.50; 95% CI: 1.15-1.96 and OR: 1.45; 95% CI: 1.01-2.07, respectively). Finally, the mean number of CVD risk factors among dialysis patients was higher in Asian patients (1.83, 95% CI: 1.64-2.04) compared with white patients (1.52, 95% CI: 1.40-1.65). CONCLUSIONS: We found a higher prevalence of modifiable CVD risk factors in Asian children on RRT. Early identification and management of these risk factors could potentially improve long-term outcomes.

Impact of Renal Replacement Therapy in Childhood on Long-Term Socioprofessional Outcomes: A 30-year Follow-Up Study.

OBJECTIVE: To evaluate socioprofessional outcomes after 30 years of renal replacement therapy (RRT) and explore predictors of these outcomes. STUDY DESIGN: The cohort comprised all Dutch patients, born before 1979, who started RRT at age <15 years in 1972-1992. Outcomes including family life, educational attainment, and professional life were obtained in 2000 and 2010 in 80 out of 152 survivors. Participants also completed the Course of Life Questionnaire in 2000, which retrospectively assessed the achievement of developmental milestones while growing up. Socioprofessional outcomes in 2010 were compared with the age-matched general population and with outcomes obtained in 2000. Logistic regression analysis was performed to identify determinants of socioprofessional outcomes. RESULTS: Mean age and time on RRT in 2010 were 40.6 years (range 32.1-52.4) and 28.9 years (range 18.1-39.7), respectively. Patients were less likely to be employed (62.5% vs 81.0%) and have children (28.8% vs 64.8%) compared with the age-matched general population. Comorbidities, dialysis, short stature, and fewer milestones on autonomy were associated with adverse outcomes. Compared with 2000, in 2010 more patients lived with a partner (68.8% vs 43.0%), and more patients had completed a high level educational degree (22.5% vs 13.9%). However, more patients were unable to work on medical grounds in 2010 (36.3% vs 16.3%). CONCLUSIONS: Survivors of pediatric end-stage renal disease may gain social autonomy and optimal educational attainment at an older age compared with their general population counterparts. Awareness among health care professionals of the potential of these children and tailored psychosocial interventions might improve socioprofessional development.

Racial Disparities in Access to and Outcomes of Kidney Transplantation in Children, Adolescents, and Young Adults: Results From the ESPN/ERA-EDTA (European Society of Pediatric Nephrology/European Renal Association-European Dialysis and Transplant Association) Registry.

BACKGROUND: Racial disparities in kidney transplantation in children have been found in the United States, but have not been studied before in Europe. STUDY DESIGN: Cohort study. SETTING & PARTICIPANTS: Data were derived from the ESPN/ERA-EDTA Registry, an international pediatric renal registry collecting data from 36 European countries. This analysis included 1,134 young patients (aged ≤19 years) from 8 medium- to high-income countries who initiated renal replacement therapy (RRT) in 2006 to 2012. FACTOR: Racial background. OUTCOMES & MEASUREMENTS: Differences between racial groups in access to kidney transplantation, transplant survival, and overall survival on RRT were examined using Cox regression analysis while adjusting for age at RRT initiation, sex, and country of residence. RESULTS: 868 (76.5%) patients were white; 59 (5.2%), black; 116 (10.2%), Asian; and 91 (8.0%), from other racial groups. After a median follow-up of 2.8 (range, 0.1-3.0) years, we found that black (HR, 0.49; 95% CI, 0.34-0.72) and Asian (HR, 0.54; 95% CI, 0.41-0.71) patients were less likely to receive a kidney transplant than white patients. These disparities persisted after adjustment for primary renal disease. Transplant survival rates were similar across racial groups. Asian patients had higher overall mortality risk on RRT compared with white patients (HR, 2.50; 95% CI, 1.14-5.49). Adjustment for primary kidney disease reduced the effect of Asian background, suggesting that part of the association may be explained by differences in the underlying kidney disease between racial groups. LIMITATIONS: No data for socioeconomic status, blood group, and HLA profile. CONCLUSIONS: We believe this is the first study examining racial differences in access to and outcomes of kidney transplantation in a large European population. We found important differences with less favorable outcomes for black and Asian patients. Further research is required to address the barriers to optimal treatment among racial minority groups.

Health-related quality of life in patients with pediatric onset of end-stage renal disease: state of the art and recommendations for clinical practice.

Health-related quality of life (HRQoL) is increasingly recognized as a key outcome in both clinical and research settings in the pediatric population with end-stage renal disease (ESRD). This review aims to: (1) summarize the current knowledge on HRQoL and socioprofessional outcomes and (2) provide strategies for incorporation of HRQoL assessment into clinical practice. Studies report that pediatric patients with ESRD have significantly lower HRQoL scores compared with children with other chronic diseases. Patients treated by dialysis are at particularly high risk for impaired HRQoL. Furthermore, patients more often have impaired neurocognitive functioning and lower academic achievement. Important determinants of impaired HRQoL include medical factors (i.e., receiving dialysis, disabling comorbidities, cosmetic side effects, stunted growth), sociodemographic factors (i.e., female gender, non-Western background) and psychosocial factors (i.e., noneffective coping strategies). Contrary to the situation in childhood, adult survivors of pediatric ESRD report a normal mental HRQoL. Despite this subjective feeling of well-being, these patients have on average experienced significantly more difficulties in completing their education, developing intimate relationships, and securing employment. Several medical and psychosocial strategies may potentially improve HRQoL in children with ESRD. Regular assessment of HRQoL and neurocognitive functioning in order to identify areas in which therapies and interventions may be required should be part of standard clinical care.

Long-term quality of life and social outcome of childhood end-stage renal disease.

OBJECTIVE: To assess quality of life (QoL) and social status after 30 years of renal-replacement therapy (RRT) and to explore determinants of this QoL. STUDY DESIGN: The cohort comprised all Dutch patients, born before 1979, who started RRT at age<15 years in 1972-1992. All patients still alive in 2010 were asked to complete questionnaires on QoL (RAND-36) and sociodemographic outcomes. Scores were compared with those in the age-matched general population and with previous patient scores obtained in 2000. We performed logistic regression analysis for prediction of QoL outcomes. RESULTS: A total of 89 of 152 patients still alive in 2010 participated. Compared with the general population, QoL more often was impaired in patients receiving dialysis for most physical domains, in transplanted patients only on general health perception. Both transplanted and dialysis patients had normal or high scores on mental health. Scores in most physical domains were lower than in 2000. Patients were employed less often (61.8% vs 81.0%), had fewer offspring (31.5 vs 64.8%), and were less likely to have an income equal to or above average (34.8% vs 55.7%) compared with the general population. Disabilities, comorbidity, and unemployment were associated with impaired QoL. CONCLUSIONS: After 30 years of RRT, adult survivors of pediatric end-stage renal disease have an impaired physical but a good mental QoL. The decrease of general health perception and physical functioning over time is worrying and may further hamper employment status and social functioning of these relatively young patients.