Long-Term Quality of Life and Social Outcome of Childhood End-Stage Renal Disease

Tjaden, Lidwien A.; Vogelzang, Judith L.; Jager, Kitty J.; Stralen, Karlijn J. van; Maurice‐Stam, Heleen; Grootenhuis, Martha A.; Groothoff, Jaap W.

doi:10.1016/j.jpeds.2014.04.013

Cited by 53 publications

(51 citation statements)

References 38 publications

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“…A French study assessing 374 adult (aged 24–36) survivors of pediatric transplantation found that professional occupation was similar to the French general population but the unemployment rate was higher: 18.5 % vs. 10.4 %; P < 0.01. This rate is comparable with findings in Dutch adults with ESRD since childhood (19.4 % vs. 11.1 % in the healthy population; P < 0.01 [92]) and with findings from a German study in 120 middle-aged survivors of pediatric ESRD (14.0 % vs. 9.0 % in the healthy population; P < 0.01) [101]. All studies found relatively lower educational attainment in patients compared with the general population, which partly explains the disadvantage in gaining employment.…”

Section: Children Reaching Adulthoodsupporting

confidence: 88%

“…According to two studies [92, 93], adult patients with a functioning kidney transplant achieve normal scores on self-assessment of psychosocial and physical health. In a Dutch cohort study on the long-term effects of renal insufficiency in children (LERIC) we found that after 20–40 years of RRT [92], the proportion of impaired HRQoL in transplanted patients was only higher for the domain of general health perception when compared with the aged-matched general population. Mental health of transplanted patients was even significantly better than in the general population.…”

Section: Children Reaching Adulthoodmentioning

confidence: 99%

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

et al. 2015

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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.

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Section: Children Reaching Adulthoodsupporting

confidence: 88%

Section: Children Reaching Adulthoodmentioning

confidence: 99%

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

et al. 2015

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“…Some studies also found no changes (11,33,34), which makes us think of the possibility of other factors occurring besides those investigated here, which could be contributing to these results. Thus, the present study recognizes that inclusion of laboratorial factors (urea, creatinine, PTH (ParaThyroid Hormone)), emotional factors (depression and anxiety), functional factors (evaluation of activities of daily living and work) and the analysis of hemodialysis efficiency (Kt/V) are limiting factors that need to be introduced to verify its association with QoL in future studies.…”

Section: Discussionsupporting

confidence: 65%

“…In CKD patients undergoing HD, the main tool used to measure QOL is the Kidney Disease and Quality of Life Short Form (KDQOL-SF TM ) (9,10). Treatment time is also a clinical determinant that when associated with factors such as advanced age, female gender, low level of schooling, unemployment and low income can affect QoL (11,12). Some studies have not identified significant changes in QoL in relation to HD treatment time (13,14).…”

Section: Introductionmentioning

confidence: 99%

Quality of life and duration of hemodialysis in patients with chronic kidney disease (CKD): a cross-sectional study

et al. 2017

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Introduction: Quality of life (QoL) of hemodialysis patients is a major evaluative marker currently measured, while treatment time is a clinical determinant associated with impaired QOL. Objective: To evaluate QOL in individuals undergoing hemodialysis (HD) considering treatment time and the presence of comorbidities. Methods: A cross-sectional study conducted in the hemodialysis unit of the Hospital das Clínicas da Universidade Federal de Pernambuco (HC-UFPE). We studied patients with Chronic Kidney Disease (CKD) of both genders over the age of 18 years, at any level of education and undergoing HD for at least 6 months. We evaluated the demographic/socioeconomic and clinical data, followed by application of the quality of life questionnaire (KDQOL-SF). Results: Participants were 47 patients with a mean age of 50.94 ± 13.33 years, 55.3% were male and average treatment time of 57.35 ± 61.46 months. Hypertension (59.6%) was the most frequent underlying disease. According to the responses obtained through the KDQOL-SF, the situation at work and physical limitation scored worse. Sexual function (85.83) and encouragement by the team had the best performance. There were no differences in dimensions of questionnaire and treatment time. Conclusion: The presence of comorbidities and HD duration were not found to be possible factors for changing QoL in this study. However, we suggest that future studies evaluate other factors such as laboratory, emotional and functional data to check for changes in QoL in these patients related to HD duration.

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“…Another possible explanation could be perceptions by providers of lower quality of life among children on dialysis and high burdens placed on parents and caregivers. Although children with ESRD do report diminished HRQOL scores when compared with healthy controls, HRQOL scores for children after renal transplantation appear to be similar to children with other types of chronic diseases (58)(59)(60)(61)(62). Furthermore, it is not clear why future quality of life would result in withholding treatment for a newborn, but not a toddler or older child.…”

Section: (35-45) a 2007 North American Pediatric Renal Trials And Comentioning

confidence: 95%

Update on Ethical Issues in Pediatric Dialysis: Has Pediatric Dialysis Become Morally Obligatory?

Wightman

Freeman

2016

CJASN

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Improvements in pediatric dialysis over the past 50 years have made the decision to proceed with dialysis straightforward for the majority of pediatric patients. For certain groups, however, such as children with multiple comorbid conditions, children and families with few social and economic resources, and neonates and infants, the decision of whether to proceed with dialysis remains much more controversial. In this review, we will examine the best available data regarding the outcomes of dialysis in these populations and analyze the important ethical considerations that should guide decisions regarding dialysis for these patients. We conclude that providers must continue to follow a nuanced and individualized approach in decision making for each child and to recognize that, regardless of the decision reached about dialysis, there is a continued duty to care for patients and families to maximize the remaining quality of their lives.

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Long-Term Quality of Life and Social Outcome of Childhood End-Stage Renal Disease

Cited by 53 publications

References 38 publications

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

Quality of life and duration of hemodialysis in patients with chronic kidney disease (CKD): a cross-sectional study

Update on Ethical Issues in Pediatric Dialysis: Has Pediatric Dialysis Become Morally Obligatory?

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