Quality of life in adults with end-stage renal disease since childhood is only partially impaired

Groothoff, Jaap W.; Grootenhuis, Martha A.; Offringa, Martin; Gruppen, Mariken; Korevaar, Joke C.; Heymans, H. S. A.

doi:10.1093/ndt/18.2.310

Cited by 40 publications

(34 citation statements)

References 18 publications

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“…We found that dialysis patients with paediatric ESRD had an impaired physical QoL as adults, but they had a normal mental QoL. Important medical determinants of QoL were co-morbidity for all patients and disabilities for patients that had received a transplant [1]. Rosenkranz et al [2] found that general and health-related satisfaction with life of adult patients with ESRD was reduced compared to that of the general population.…”

Section: Introductionmentioning

confidence: 78%

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

et al. 2006

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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.

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Section: Introductionmentioning

confidence: 78%

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

et al. 2006

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“…1 Correlation between child-self and parent-proxy total scores in chronic kidney disease (CKD) (r=0.612, p=0.000) Fig. 2 Correlation between child-self and parent-proxy total scores in dialysis patients (DP) (r=0.519, p=0.005) children with end-stage renal disease (ESRD) to prepare them for active participation in society in adult life [20,21]. In contrast to research on QoL in adults, few studies on children and adolescents in the general population have been carried out using large representative samples.…”

Section: Discussionmentioning

confidence: 99%

“…Little is yet known about the factors influencing the extent to which child-self and parent-proxy reports differ with respect to QoL. Concordance rates between child and parent varied between different clinical groups and healthy children as well [21,26]. In some studies, children evaluated themselves more negatively than did their parents [26,27], whereas other parent-proxy reports had lower QoL scores than did child-self assessments [12,14,26,28,29].…”

Section: 00mentioning

confidence: 99%

Quality of life in children with chronic kidney disease (with child and parent assessments)

et al. 2010

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Herein the results of a multicenter study from the Turkish Pediatric Kidney Transplantation Study Group are reported. The aims of this study were to compare the quality of life (QoL) scores of Turkish children who are dialysis patients (DP), renal transplant recipients (TR), and age-matched healthy controls and to compare child-self and parent-proxy scores. The Turkish versions of the Kinder Lebensqualität Fragebogen (KINDL(R)) questionnaires were used as a QoL measure. The study group consisted of 211 children and adolescents with chronic kidney disease (CKD) (139 TR and 72 DP aged between 4-18 years; 13.7 +/- 3.5 years) from 11 university hospitals, 129 parents of these patients, 232 age-matched healthy children and adolescents (aged between 4-18 years; 13.1+/-3.5 years) and 156 of their parents. Patients with CKD had lower scores in all subscales except for physical well-being than those in the control group. TR had higher scores in physical well-being, self-esteem, friends' subscales, and total scores than DP. Child-self scores were lower than parent-proxy scores, especially in CKD, DP, and control groups. Concordance between parent-proxy and child-self reports in the TR, DP, CKD, and control groups was only moderate for the majority of subscales (r = 0.41-0.61). It was concluded that parent-proxy scores on the QoL were not equivalent to child-self scores and that evaluating both children's and parents' perspectives were important. Additionally, psychosocial counseling is crucial not only for patients with CKD but also for their parents.

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“…End-stage renal disease in childhood is associated with retarded development of social as well as cognitive capacities (4,31). Dialysis leads to prolonged parental dependency into adult age, unemployment and a lower level of education, relative to the duration of dialysis (1,12,32). The development of confidence and independency in adolescence is better in patients transplanted without prior dialysis (33,34).…”

Section: Discussionmentioning

confidence: 99%

Kidney Transplantation Without Prior Dialysis in Children: The Eurotransplant Experience

Cransberg

Smits

Offner

et al. 2006

American Journal of Transplantation

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Kidney transplantation without prior dialysis may prevent dialysis-associated morbidity. We analyzed the outcome of 1113 first kidney transplants in children performed between 1990 and 2000 in the Eurotransplant community. Enlistment for a deceased donor kidney before start of dialysis (127/895, 14%) made dialysis redundant in 55% of cases. Mean residual creatinine clearance at transplantation of these patients was 8 mL/min/1.73 m 2 . Pre-emptive transplantations of deceased donor kidneys showed less acute rejections (52% vs. 37% rejection-free at 3 years, p = 0.039), compared to transplantations following dialysis. The difference in graft survival between non-dialyzed and dialyzed patients (82% vs. 69% at 6 year) did not reach statistical significance (p = 0.055). No differences were noted after living donor transplantation. Multivariate analysis showed that the period of transplantation was the strongest predictor of graft survival (p < 0.001). Congenital structural abnormalities such as primary kidney disease predominated in nondialyzed patients as compared to dialyzed patients (p < 0.001); this factor did not influence graft survival. Based on our conclusion that pre-emptive transplantation is at least as good as post-dialysis transplantation, as well as on quality of life arguments, we recommend to consider pre-emptive transplantation in children with end-stage renal failure.

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Quality of life in adults with end-stage renal disease since childhood is only partially impaired

Abstract: Dialysis patients with paediatric ESRD have an impaired physical quality of life, but in contrast to dialysis patients with adult ESRD onset, they have a normal mental quality of life.

Cited by 40 publications

References 18 publications

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

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

Quality of life in children with chronic kidney disease (with child and parent assessments)

Kidney Transplantation Without Prior Dialysis in Children: The Eurotransplant Experience

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