Perit Dial Int
29(Supplement_2):
190-191
2009
© 2009 International Society for Peritoneal Dialysis
Part 6: Pediatric Peritoneal Dialysis |
QUALITY OF LIFE IN CHILDREN WITH END-STAGE RENAL DISEASE: DOES TREATMENT MODALITY MATTER?
Wai-Ming Lai
Paediatric Nephrology Center, Department of Paediatrics and Adolescent
Medicine, Princess Margaret Hospital, Hong Kong SAR, PR China
Correspondence to: W.M. Lai, Department of Paediatrics and Adolescent
Medicine, Princess Margaret Hospital, Lai Chi Kok, Kowloon, Hong Kong SAR, PR
China.
laiwm2{at}ha.org.hk
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ABSTRACT
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In children with end-stage renal disease (ESRD), health-related quality
of life (HRQOL) is a useful and important clinical measure for monitoring the
child's well-being and functional status. One of the commonly used generic
HRQOL instruments in children is the Pediatric Quality of Life Inventory,
because an ESRD-specific instrument for children is still lacking. In the
limited studies of HRQOL in children with ESRD, a significant effect of ESRD
is seen, with significantly lower HRQOL scores than are seen in healthy
children. In future, a pediatric ESRD-specific instrument is needed to address
differences in HRQOL between children on hemodialysis, on peritoneal dialysis,
and with a kidney graft.
KEY WORDS: End-stage renal disease; health-related quality of life; pediatric nephrology.
A heavy burden of disease rests on children with end-stage renal disease
(ESRD) and their families. Monitoring functional status and subjective state
of well-being as it relates to health, called health-related quality of life
(HRQOL), is of particular importance in children with ESRD. The HRQOL is an
important clinical measure of the effects of disease and of the beneficial
effects of medical treatment for children undergoing hemodialysis (HD),
peritoneal dialysis (PD), and kidney transplantation (TX)
(1).
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INSTRUMENTS FOR MEASURING HRQOL
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A HRQOL instrument must be multidimensional and must capture, at a minimum,
physical, psychological (emotional and cognitive), and social functioning
(1). The 36-item health survey
from the RAND Corporation (a generic measure of HRQOL) and the Kidney Disease
Quality of Life instrument (an ESRD-specific survey) are commonly used for
evaluation of HRQOL in adults with chronic kidney disease (CKD) with or
without dialysis (2). In
children, the Pediatric Quality of Life Inventory (PedsQL), a generic health
status instrument, is commonly used in children with chronic diseases. No
ESRD-specific instrument for children has been established. Goldstein et
al. recently developed a PedsQL 3.0 ESRD Module, although additional
validation tests are required
(3).
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STUDIES OF HRQOL IN CHILDREN WITH ESRD
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Very few reports on HRQOL in children with ESRD are available.
Varni et al. (4)
used the PedsQL 4.0 Generic Core Scales to compare HRQOL across 10 chronic
disease clusters. In that study, 96 children with ESRD were surveyed. Children
with ESRD self-reported impaired HRQOL as compared with healthy children.
Patients on HD self-reported significantly lower overall HRQOL and physical
health as compared with patients who underwent TX. No difference was found
between children on PD and those who underwent TX.
In an assessment in which McKenna et al. used the PedsQL Generic
Core Scales to measure HRQOL in 64 children with CKD, the children with CKD
scored lower in all domains than did healthy controls. No significant
differences were observed for children on HD as compared with those on PD.
Children on dialysis scored equal to or higher than the TX group in all
domains (5).
Goldstein et al. used the PedsQL Generic Core Scales to study the
HRQOL of 96 children with ESRD. The ESRD patients scored lower in all domains
than did healthy children. Patients who underwent TX reported better physical
and psychosocial health than did dialysis patients
(6).
Chiu et al. studied HRQOL in 42 children with ESRD. Their Chinese
7-domain HRQOL questionnaire was adapted from the PedsQL. No significant
difference was found between the HRQOL scores of automated PD (APD) patients
and those who underwent TX (7).
In a recent follow-up survey of 55 children with ESRD, patients who underwent
TX scored higher in all aspects than did APD patients, but only the scores for
sleep problems reached statistical significance between the groups.
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CONCLUSIONS
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The effect of ESRD on HRQOL in pediatric patients is significant. Children
with ESRD, and their parents, report significantly lower HRQOL than do healthy
children. However, the differences in HRQOL for children treated with
different renal replacement modalities are less conclusive. In general,
patients who undergo TX, and their parents, score higher than do dialysis
patients. Large-scale studies and use of an ESRD-specific pediatric HRQOL
assessment instrument are needed to address the difference in HRQOL for
children on PD, on HD, and after TX.
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REFERENCES
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- United States, Department of Health and Human Services, Food and
Drug Administration, Center for Drug Evaluation and Research (CDER); Center
for Biologics Evaluation and Research; and Center for Devices and Radiological
Health. Guidance for Industry: Patient-Reported Outcome Measures: Use
in Medical Product Development to Support Labeling Claims. Rockville,
MD: CDER; 2006.
- Kalantar–Zadeh K, Unruh M. Health related quality of life in
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- Goldstein SL, Graham N, Warady BA, Seikaly M, McDonald R, Burwinkle
TM, et al. Measuring health-related quality of life in children with
ESRD: performance of the generic and ESRD-specific instrument of the Pediatric
Quality of Life Inventory (PedsQL). Am J Kidney Dis2008; 51:285
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of life in children and adolescents with chronic conditions: a comparative
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- McKenna AM, Keating LE, Vigneux A, Stevens S, Williams A, Geary DF.
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ABSTRACT
INSTRUMENTS FOR MEASURING HRQOL
