The impact of delayed development on the quality of life of adults with end-stage renal disease since childhood

Little is known about the impact of the course of life of children with end-stage renal disease (ESRD) on their quality of life in adulthood. We therefore assessed the course of life of adult patients with onset of ESRD at an age of <15 years between 1972 and 1992 and compared it with that of the general population. Furthermore, we explored how course of life is associated with quality of life (QoL) in young adulthood. A total of 75 young adult patients who had had ESRD since childhood, aged between 20 years and 30 years, completed the RAND-36 Health Survey and a questionnaire, which retrospectively assesses the achievement of development milestones. Patients achieved fewer milestones than peers with respect to autonomy, social, and psycho-sexual development, and displayed less risk behaviour. Patients who achieved fewer social milestones while growing up experienced more emotional problems and less vitality, and they had a lesser overall mental quality of life. Paediatric nephrologists should pay more attention to the development of social and independent functioning of children with ESRD in order to prepare them for active participation in society in adult life. © IPNA 2006

Exercise training in pediatric patients with end-stage renal disease

The objective of this study was to determine the feasibility and efficacy of an exercise training program to improve exercise capacity and fatigue level in pediatric patients with end-stage renal disease (ESRD). Twenty children on dialysis intended to perform a 12-week graded community-based exercise program. Exercise capacity and fatigue level were studied; muscle force and health-related quality of life were secondary outcomes. All outcomes were measured at baseline (T = 0) and after intervention (T = 1). Fourteen of the 20 patients (70%) either did not start the program or did not complete the program. Of these patients, seven did not complete or even start the exercise program because of a combination of lack of time and motivational problems. Six patients were not able to continue the program or were unable to do the follow-up measurements because of medical problems. Exercise capacity and muscle strength was higher after the exercise program in the children who completed the training. In conclusion, exercise training is difficult to perform in children with ESRD and is not always feasible in real-life situations for many children with ESRD

Kidney transplantation in childhood: mental health and quality of life of children and caregivers

Our objective was to assess the mental health and health-related quality of life (HRQOL) in children and their parents after renal transplantation (TX) compared to healthy controls and children with acute lymphoblastic leukemia (ALL) and to identify possible health status variables associated with impaired mental health and HRQOL. Thirty-eight TX children with a median age of 13 (range 3–19) years were investigated. Mental health was assessed by the Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales and the Strength and Difficulties Questionnaire (SDQ-20). Each mother’s own mental health and QOL were assessed by the General Health Questionnaire (GHQ-30) and the Quality of Life Scale (QOLS). Forty children with ALL [median age 11 (8.5–15.4) years] and 42 healthy children [median age 11 (8.9– 15) years] served as controls. Treadmill exercise results from 22 of the 38 patients were included in the analysis. TX children showed significantly higher levels of mental health problems and lower HRQOL at 2 to 16 years after transplantation compared to both control groups. Body mass index and maximal oxygen uptake (n = 22/38) were significant predictors of child mental health (SDQ) and child QOL (PedsQL), respectively. Based on these results, we suggest that rehabilitation after TX should include a focus on physical activity and QOL to reduce interconnected physical and psychological morbidity in kidney TX children

Motor performance, exercise tolerance, and health-related quality of life in children on dialysis

In contrast to the adult population, little is known regarding health-related quality of life and exercise tolerance in children with end-stage renal disease (ESRD) undergoing chronic intermittent hemodialysis. We designed a pilot study to investigate whether research into this area is indicated. The aim of this study was to describe the motor skills, exercise tolerance, and health-related quality of life in children with ESRD. The study population consisted of ten hemodialysis patients (aged 7-16 years). In eight children motor proficiency according to Bruininks-Oseretsky was determined. In all ten children a progressive exercise test on a treadmill was performed. The results were compared with an age-matched healthy reference group. Nine children filled in the TNO-AZL Child Quality of Life (TACQOL) scoring list. One child had a markedly reduced fine motor skills capacity; another five children scored less than or equal to-2 SD compared with healthy children in gross motor skills. Seven children showed a diminished VO(2)max (per kilogram body weight); six of these are physically inactive. Four of these seven children did not sustain the maximum workload. The self-assessed physical and mental health of children on dialysis seems comparable to the general population. We found no correlation between exercise performance or motor skills and hemoglobin levels, Kt/V, and time on dialysis. In conclusion, in this study most children had a reduced exercise tolerance and gross motor skills. There was no difference in fine motor skills. Pediatric dialysis patients report a good health-related quality of life