Nephrol Dial Transplant (2006) 21: 1899–1905
doi:10.1093/ndt/gfl091
Advance Access publication 12 April 2006
Original Article
Quality of life in children with chronic kidney
disease—patient and caregiver assessments
Ann Marie McKenna, Laura E. Keating, Annette Vigneux, Sarah Stevens,
Angela Williams and Denis F. Geary
Division of Nephrology, Hospital for Sick Children, University of Toronto, Toronto, Canada
Abstract
Background. Children with chronic kidney disease
(CKD) require strict dietary and lifestyle modifi-
cations, however, there is little information on their
quality of life. Our objective was to compare health-
related quality of life (HRQOL) in children with
different stages of CKD to each other and to a control
population.
Methods. A cross-sectional assessment of HRQOL for
physical, emotional, social and school domains was
performed using the PedsQLTM Generic Core Scale.
Data were collected from 20 children with chronic
renal insufficiency (CRI; creatinine >200 mmol/l), 12
on maintenance haemodialysis or peritoneal dialysis
(DIAL) and 27 with renal transplants (TX). Caregiver
proxy reports were obtained for CRI (n ¼ 20), DIAL
(n ¼ 17) and TX (n ¼ 21). Between-group differences
were assessed with ANOVA for the CKD groups;
t-tests compared our CKD samples with controls.
Results. Children with CKD scored lower than the
controls in all subscales, however, only TX compared
with controls was significant (P<0.02). DIAL children
scored equal to or higher than the TX group in
all domains. Analysis of covariance with number
of medications as covariate yielded a significant
result for the physical subscale (F ¼ 8.95, df ¼ 3, 53,
P ¼ 0.004). Proxy caregiver scores were lower than
patient scores in all four domains.
Conclusions. Children with CKD rate their HRQOL
lower than the healthy controls do. It may be
reassuring to caregivers that children on dialysis
rate their HRQOL higher than would be expected.
However, it is of some concern that caregiver percep-
tion of improved HRQOL following transplantation
was not shared by their children in the present study.
Correspondence and offprint requests to: Dr Denis F. Geary, MB
FRCP(C), Division of Nephrology, Hospital for Sick Children,
Toronto M5G 1X8, ON, Canada. Email: denis.geary@sickkids.ca
ß The Author [2006]. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.
For Permissions, please email: journals.permissions@oxfordjournals.org
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Keywords: chronic renal disease; dialysis; health-
related quality of life; paediatric; renal transplant
Introduction
Children with chronic renal disease require strict
dietary and lifestyle modifications, and frequent
monitoring by a medical team [1]. Their associated
cardiovascular [2] and physical complications [3],
neuro-developmental disorders [4] and psychosocial
problems [5] may all affect quality of life.
Nonetheless, few studies have measured health-
related quality of life (HRQOL) in paediatric nephrol-
ogy patients [4,6–8]; and in particular, performed
in-group comparisons amongst patients on different
treatment modalities [9,10]. In the current study, the
HRQOL in patients with chronic renal disease aged
2–18 was compared across the modalities of chronic
renal insufficiency (CRI), end-stage renal disease
(ESRD) requiring maintenance dialysis (DIAL), and
patients with a renal transplant (TX). It was hypoth-
esized that children on haemodialysis (HD) and
peritoneal dialysis (PD) would have lower HRQOL
scores than children with CRI or renal transplant
recipients. We also predicted that parents of children
receiving dialysis would rate their child’s HRQOL
lower than the parents of children with CRI or renal
transplant recipients.
Methods
Samples
Children aged 2–18 years were recruited from nephrology
clinics at the Hospital for Sick Children, Toronto, Canada.
The study was approved by the Research Ethics Board.
Written informed consent was obtained from either a parent/
legal guardian or patients over 16 years of age, and verbal
assent from patients under 16 years of age, where appropriate.
1900
Patients were eligible if they had CRI, defined as plasma
creatinine >20 mmol/l, ESRD requiring maintenance dialysis,
or had received a renal transplant. Patients were excluded if
they had: (i) been hospitalized within the last 14 days, or had
been hospitalized for a non-renal comorbidity within the past
30 days; (ii) received a renal transplant within the past 3
months; (iii) initiated or changed dialysis modalities within
the past 30 days; or (iv) had experienced a significant life event
unrelated to their kidney disease in the past 30 days, such as
the death of a family member.
Measurement of HRQOL
This cross-sectional evaluation of HRQOL was performed
using the Paediatric Inventory of Quality of Life (PedsQLTM
Version 4.0) Core Scales. The PedsQLTM was designed to
measure HRQOL in children and adolescents, and has been
validated in children with a variety of chronic illnesses
including asthma, cancer and diabetes mellitus [11–13]. The
23-question survey asks respondents, both in a child self-
report and caregiver proxy-report, to score patient function-
ing in four domains: physical (8 questions), emotional
(5 questions), social (5 questions) and school (5 questions).
The PedsQLTM is available in four versions: toddler (2–4) by
caregiver proxy-report only, young child (5–7 years), older
child (8–12 years) and teen (13–18 years). If the patient was
identified as being developmentally delayed, the PedsQLTM
was administered according to their developmental age as
determined by the responsible physician’s assessment.
Surveys were administered once at an age-appropriate level
to each patient. If a patient or parent was unable to read the
PedsQLTM due to a language barrier, a certified interpreter
was used. All self-report forms for young children (5–7 years)
and those of older patients with visual impairments were
administered verbally by the same investigator (A.M.M.).
Surveys generated a score for each subscale between 0 and
100, with higher scores representing superior HRQOL.
Patient data
A medical chart review was performed to obtain the following
information: primary diagnosis, date of diagnosis, duration of
illness, transplant or dialysis duration, number of hospitaliza-
tions and clinic visits in the last 6 months, number of
medications, serum creatinine value and presence or absence
of significant non-renal comorbidities. For school-aged
children, patient or parent interviews were conducted to
determine the child’s schooling level, school days missed in
the previous 6 months and whether the child required special
education (supplementary tutoring or an individualized
education programme).
Statistical analyses
Between-group differences. The means from a sample of
healthy children reported by Varni et al. [14] were compared
with the three sample groups in the current study using
Student’s t-test. This control sample has been used to
compare HRQOL in patients with several other chronic
illnesses [11–13].
Mean HRQOL scores for the physical, emotional, social
and school subscales were calculated for each of the three
sample groups: CRI, dialysis and transplant. Between-group
A. M. McKenna et al.
differences on each of the four subscales were compared
using analysis of variance (ANOVA). The ANOVA was also
used to compare each subscale between children and their
caregivers. For all analyses, a Bonferroni correction for
multiple comparisons was applied.
Student’s t-tests were performed to compare mean
PedsQLTM domain scores between the following groups:
children with chronic kidney disease (CKD) and significant
non-renal comorbidities vs those without non-renal comor-
bidities; mothers compared with fathers; children on PD vs
HD; and children with and without urological diagnoses.
Evaluation of clinical parameters. Analysis of covariance
(ANCOVA) was performed on the following variables to
evaluate their effect on HRQOL: age at the time of
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questionnaire, age at the diagnosis of CKD, number of
medications, number of outpatient clinic visits in the past
6 months, duration of current modality and plasma creatinine
(CRI and transplant children only).
Inter-rater reliability. Inter-rater reliability between parent
and child was assessed with the intraclass correlation
coefficient (ICC) [15]. The ICC is used to determine the
agreement between two different raters of the same scale,
where values >0.9 would be considered excellent and a value
of 0 would signify complete disagreement between raters.
Results
A total of 64 patients with CKD and/or their primary
caregivers were recruited from June to August 2005.
Of these patients, 17 were on dialysis, 20 had CRI and
27 had received a renal transplant. Self-report data were
collected for 12 children on maintenance dialysis
(four were too young to complete the questionnaire
and one was unable due to developmental delay),
20 children with CRI and 26 children who received
a renal transplant (one patient was too young). Proxy
data were collected for 17 caregivers of children on
dialysis, 20 caregivers of children with CRI and 21
caregivers of transplanted patients (six children were
not accompanied by a caregiver to their clinic appoint-
ment). Demographic and clinical information obtained
by patient interview and medical chart review are
presented in Table 1. Reasons for admission in
transplant patients were usually unrelated to transplant
rejection; of the 10 patients hospitalized in the
past 6 months, only three had a kidney biopsy for
suspicion of rejection. Patients with significant non-
renal comorbidities are listed in Table 2.
Between-group differences
Child self-report scores, compared with those of Varni’s
healthy paediatric sample by Student’s t-test, are
presented in Table 3. All the patients in the present
study, particularly the transplant patients, scored lower
than the Varni controls.
Mean scores in each PedsQLTM subscale are
shown by treatment modality for child self-report and
parent proxy-report in Tables 3 and 4. The greatest
Health-related quality of life in children with CKD 1901
Table 1. Patient demographics

Clinical variable CRI (n ¼ 20) DIAL (n ¼ 17) TX (n ¼ 27) P-valuea

Mean (SD) age 13.2 (3.5) 12.7 (3.5) 14.0 (2.8) 0.43
2–4 years (female) 0 (0) 3 (1) 0 (0) –
5–7 years (female) 2 (0) 1 (0) 1 (0) –
8–12 years (female) 4 (1) 5 (4) 6 (0) –
13–18 years (female) 14 (6) 8 (4) 20 (9) –
Sex (% female) 7 (35.0) 9 (53) 9 (33) 0.39
Mean (SD) length on modality (months) 57.7 (74.4) 25.7 (22.7) 58.6 (47.3) 0.11
n (%) school-age patients in school full-time 17 (85.0) 11 (78.6) 24 (88.9) 0.68
Mean (SD) school days missed in the past 6 months 11.9 (12.0) 22.1 (17.1) 13.1 (15.9) 0.16
n (%) special education 7/17 (41.1) 4/10 (40.0) 8/20 (40.0) 0.99
Mean (SD) number of medications 6.2 (2.4) 8.3 (2.9) 7.4 (2.8) 0.07
Mean (SD) days hospitalized in the past month 0 (–) 3.6 (7.0) 0.5 (1.9) 0.01
n (%) patients hospitalized in the last 6 months 2 (10.0) 15 (88.2) 11 (40.7) 0.0001

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Mean (SD) days hospitalized in the last 6 months 0.65 (2.1) 15.2 (20.5) 7.8 (22.9) 0.06
Mean (SD) clinic visits in the last 6 months 5.6 (3.3) 35.4 (29.7) 15.8 (15.7) 0.0001
Mean (SD) creatinine (mmol/l) () 318.4 (123.6) n/a 99.2 (43.8) 0.0001b
Patients with significant non-renal comorbidities (%) 4 (20.0) 2 (11.8) 6 (22.2) 0.68
n (%) with urological problems 4 (20) 2 (16.7) 6 (23.1) 1.0
n (%) requiring intermittent catheterization 3 (15) 2 (16.7) 5 (19.2) 1.0

SD, standard deviation; CRI, chronic renal insufficiency; DIAL, children on maintenance dialysis; TX, renal transplant recipients.
Percentage values are based on total number of patients in each group.
a
Frequency data were assessed with chi-square or Fisher’s exact test where expected frequencies were <5; group mean differences were
assessed with ANOVA.
b
Comparison were assessed using Student’s t-test as creatinine is an estimation of kidney function for CRI and TX patients only; for
DIAL patients, creatinine is a measure of dialysis adequacy.

Table 2. Significant non-renal comorbidities It is noteworthy that the social subscore difference
between the PD and HD children (t ¼
2.75, df ¼ 10,
Modality Comorbidity P ¼ 0.03) did not withstand Bonferroni correction.
Caregivers scored their children lower in almost all
CRI Developmental delay categories than the child self-reports, as illustrated in
CRI Blackfan Diamond syndrome Figure 1. Also, in contrast to the child self-reports,
CRI Developmental delay, G tube feeds
CRI Acute lymphoblastic leukaemia caregivers assigned the lowest scores to children on
DIAL Developmental delay, blind dialysis. These differences between patients and care-
DIAL Liver transplant giver proxy-reports were not significant when analysed
TX Retinitis pigmentosa by ANOVA.
TX Developmental delay
TX Blind
TX Blind
TX Developmental delay
Evaluation of clinical parameters
TX Cloacal extrophy, colostomy The ANCOVA for the following clinical variables—age
CRI, chronic renal insufficiency; DIAL, children on maintenance at the time of questionnaire, age at the diagnosis of
dialysis; TX, renal transplant recipients. CKD, number of medications, number of outpatient
clinic visits in the past 6 months, plasma creatinine and
duration of current modality—revealed only one
between-group difference for the patients was an difference. The only significant finding was for the
inferior emotional score for renal transplant patients number of medications, which when included in the
compared with those on maintenance dialysis. model resulted in a significant between-group difference
However, this difference was not significant when a for the physical subscale score (F ¼ 8.95, df ¼ 3, 53,
Bonferroni correction was applied. Also, though not P ¼ 0.004). Further investigation revealed a significant
statistically significant, it is noteworthy that transplant negative correlation between number of medications
patients scored lower than both CRI and dialysis a patient was on and their physical subscale score
patients in all domains except the social subscale. (R ¼
0.38, P<0.0001).
There were no between-group differences in HRQOL There were 12 children identified as having a
scores for the following: mothers (n ¼ 42) compared significant non-renal comorbidity (see Table 2), how-
with fathers (n ¼ 14, P>0.32), PD (n ¼ 4) vs HD (n ¼ 8, ever, only 10 of them were able to fill out a report
P>0.03) or children with (n ¼ 12) and without (n ¼ 46) (two children were too young and only the
a urological diagnosis, whether or not they required proxy questionnaire was completed). A significant
intermittent catheterization (n ¼ 10; P>0.18). difference was observed for the social subscale between
1902 A. M. McKenna et al.
TM
Table 3. Between-group comparisons: mean (SD) PedsQL child self-report scores

Subscale Varni controls [14] (n ¼ 386)a CRI (n ¼ 20) DIAL (n ¼ 12) TX (n ¼ 26)

Physical 84.4 (17.3)b 74.6 (17.1) 71.6 (18.6) 70.0 (19.3)

Emotional 80.9 (19.6)c 73.3 (20.8) 80.0 (14.8)f 65.8 (17.4)
Social 87.4 (17.2)d 78.3 (22.5) 77.1 (27.1) 77.9 (17.3)
School 78.6 (20.5)e 62.2 (18.9) 66.4 (15.3) 60 (18.3)

CRI, chronic renal insufficiency; DIAL, children on maintenance dialysis; TX, renal transplant recipients.
a
n ranges from 386 (school) to 400 (physical and emotional), depending on the subscale.
b
Controls vs CRI: P ¼ 0.02; Controls vs DIAL: P ¼ 0.03; Controls vs TX: P ¼ 0.0009.
c
Controls vs TX: P ¼ 0.0002.
d
Controls vs TX: P ¼ 0.01.
e
Controls vs CRI: P ¼ 0.0009; Controls vs DIAL: P ¼ 0.02; Controls vs TX: P ¼ 0.0001.
f
TX vs DIAL: P ¼ 0.02.

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Table 4. Between-group comparisons: mean (SD) caregiver proxy-report PedsQLTM scores

Subscale Varni controls [14] (n ¼ 611)a CRI (n ¼ 20) DIAL (n ¼ 17) TX (n ¼ 21)

Physical 89.3 (16.4)b 62.7 (21.5) 57.0 (25.8) 61.6 (25.0)

Emotional 82.6 (17.5)c 67.0 (17.6) 54.9 (21.4)f 66.2 (17.8)
Social 91.6 (14.2)d 68.5 (20.8) 61.2 (21.8) 64.3 (22.6)
School 85.5 (17.6)e 58.2 (18.2) 49.4 (22.4) 54.3 (23.2)

CRI, chronic renal insufficiency; DIAL, children on maintenance dialysis; TX, renal transplant recipients.
a
n ranges from 611 (school) to 718 (emotional), depending on the subscale.
b
Controls vs CRI, DIAL and TX: P<0.0001.
c
Controls vs CRI, DIAL and TX: P<0.0009.
d
Controls vs CRI, DIAL and TX: P<0.0001.
e
Controls vs CRI, DIAL and TX: P<0.0001.
f
TX vs DIAL: P ¼ 0.08.

children with (mean±SD ¼ 62.0±29.0) and without
(mean±SD ¼ 81.1±17.6) non-renal comorbidities
(P ¼ 0.008). This finding remained significant even
when a Bonferroni adjustment for multiple com-
parisons was applied. No between-group differences
were observed for the physical, emotional or school
subscale scores (P>0.39).
Inter-rater reliability
The ICC coefficient between parent and child reports
was calculated to be 0.63, which indicates a modest
agreement on PedsQLTM scores between children and
their parents.
Discussion
This study demonstrates that HRQOL assessed by
the PedsQLTM is lower in patients with CKD than
healthy children. All three groups of patients with CKD
reported HRQOL scores in both self- and proxy-
reports that were lower compared with the sample of
healthy children generated by Varni et al. [14]. We had
hypothesized that patients with ESRD requiring main-
tenance dialysis would score lowest among the sample
groups in the present study. However, despite their
increased hospitalization time and number of medica-
tions (Table 1), the dialysis patients had higher scores
in emotional and school sub-scales than the trans-
planted children, although the differences did not
achieve statistical significance. We did observe a
significant effect of medications on the physical sub-
score, as the more medications a child was on, the lower
the score. This finding possibly reflects that children
on many medications are experiencing a greater severity
of illness and/or more illness-related complications,
as only the physical score was affected. If being on
many medications were deemed to be inconvenient
or a constant reminder of a child’s chronic condition,
one would expect the emotional score to be affected
by this variable as well. It was also noteworthy that
parents rate their child’s quality of life lower than the
patient themselves, and this was particularly so for
the parents of children on dialysis. The proxy-reports
therefore supported our hypothesis that children on
dialysis have the poorest HRQOL. It should be
reassuring for parents and caregivers that their percep-
tions of a patient’s HRQOL may underestimate the
patient’s own perceptions.
The current study and the study by Reynolds et al.
[16] are the only two reports of HRQOL in young
children as well as adolescents with CRI, dialysis
and transplant recipients from a single centre. In the
present study, we used the PedsQLTM measure because
of its validity across a wide spectrum of chronic
childhood diseases, its ease of performance and its
ability to evaluate HRQOL in young children as well
as adolescents. Direct comparison with other studies
Health-related quality of life in children with CKD 1903

A CRI: controls, probands and parents B Dialysis: controls, probands and parents
100 100
Probands (n=20) Parents (n=20) Paediatric controls (n=386*) Probands (n=12) Parents (n=17) Paediatric controls (n=386*)
90 90

80 80

70 70

60 60

50 50

40 40
Physical Emotional Social School Physical Emotional Social School

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C Transplant recipients: controls, probands and parents
100
Probands (n=26) Parents (n=21) Paediatric controls (n=386*)

90

80

70

60
*n for the Varni et al. controls ranges from 386
50 (school) to 400 (physical and emotional),
depending on the subscale
40
Physical Emotional Social School

Fig. 1. PedsQLTM scores for controls, probands and parents. In all three graphs, the gray triangles represent the mean scores of the Varni
et al. [14] paediatric control sample. (A) The mean scores of the probands with CRI (black circles) and their parents (black diamonds).
(B) The mean scores of the probands on maintenance dialysis (black circles) and their parents (black diamonds). (C) The mean scores of
the renal transplant recipient probands (black circles) and their parents (black diamonds).

is difficult, because most used different assessment
measures. Nonetheless, our findings are consistent with
Eijsermans et al. [6] who reported no difference in
HRQOL between children on dialysis and those who
have received a renal transplant, and Qvist et al. [8] who
reported that transplant recipients had lower scores
than controls for attention and overall HRQOL.
However, results from the current study are not
consistent with three other studies that compared
HRQOL in children with CKD. Manificat et al. [7]
reported no difference on transplanted children’s
HRQOL compared with healthy controls. In their
multicentre study, Gerson et al. [9] reported that 21
adolescent patients (aged 10–18 years) on dialysis
demonstrated poorer activity levels, home safety and
increased physical discomfort compared with CRI,
transplant recipients and healthy controls. Also,
Reynolds et al. [10] reported that children and adoles-
cents on haemodialysis were less likely to have a special
friend and had a lower self-esteem than CRI, transplant
and controls and that children with CRI and on
dialysis had higher depression scores than transplant
or control children [10]. Small sample sizes and variable
measures of HRQOL may contribute to the divergence
of data in this population.
The results of our analyses illustrated some surpris-
ing trends. Emotional functioning saw the most
diversification by treatment group in self-report scores
and, unexpectedly, the emotional scores of dialysis
patients were similar to those of the Varni et al. [14]
controls. We also found that the rates of non-renal
comorbidities were lower in the dialysis group than in
the transplant or CRI groups. Although this difference
was not significant, it is possible that this could have
contributed to lower overall scores in the transplant
group. Though fears about kidney rejection could play
a role in lower HRQOL scores for transplant patients,
only 3/27 children in the transplant group had been
hospitalized for suspected rejection in the previous
6 months. The elevated perception of emotional state
in dialysis patients when compared with others
with chronic renal disease has also been reported by
Luque-Coqui et al. [17] who compared self-esteem in
paediatric peritoneal dialysis patients vs renal trans-
plant recipients. An explanation for this unexpected
result might be found in the ‘response shift’, a theory
generated to explain why paediatric oncology patients
report increasing positive feelings over a stable or
even deteriorating clinical course [18]. The response
shift suggests that patients’ internal standards change
1904
as they adapt to their diagnosis and medical surround-
ings, yielding higher self-reported HRQOL as living
with illness becomes routine. As the current study is
a cross-sectional examination of quality of life with a
small sample, concrete inferences regarding response
shift in paediatric dialysis patients cannot be made;
however, the subject warrants future prospective
investigation.
Inter-rater reliability between caregivers and
patients, assessed by the ICC, yielded a modest
correlation of 0.63 [15]. Children rated their HRQOL
higher than their caregivers perceived it to be. A lack
of concordance between children and caregivers has
been reported in healthy [19] and chronically ill [20]
children. As parent and child data may reflect
individual standards, even when evaluating the same
subject, this discrepancy is not surprising. In evaluating
proxy-reports of HRQOL in healthy children,
Achenbach et al. [19] found a significant correlation
between ratings of mothers and fathers and in the
present study we reported no significant difference
between the scores of mothers compared with fathers.
Holmbeck and colleagues [21] suggest that a child’s
perceptions of health status might mirror their
parent’s only when they mature cognitively to the
level of their parent. A review of parental proxy-report
in a child’s HRQOL suggests that inter-rater agreement
on observable factors such as physical functioning
may be more consistent than experienced factors
such as emotional and social functioning, though the
authors recommended that all measures of paediatric
quality of life should include both self- and proxy-
reports [22].
A limitation of the current study is the small sample
size. To increase the power of our analyses, PD and HD
patients were grouped together (n ¼ 17), although adult
studies have suggested that adults on home HD and PD
have higher HRQOL than in-centre HD patients [23].
In the current study, no significant differences were
observed for children on HD compared with PD.
Significant differences between our treatment groups
might have been detected if a disease-specific measure
of HRQOL had been used, as disease-specific measures
are more responsive to clinical changes than generic
measures [24]. However, we are not aware of any
validated HRQOL measure for children with CKD.
The use of generic forms for measurement of
HRQOL is recommended for comparison of patients
with different diseases, or comparison between children
with chronic disease and a healthy population [25].
In the current study, it allowed us to compare our
population of children with CKD to a previously
reported control population. However, it is acknow-
ledged that the PedsQLTM has not been validated
specifically in children with chronic renal disease.
Nonetheless, it has been validated in children with
many different chronic illnesses including cancer,
asthma and diabetes mellitus [11–13]. The scores of
our chronic patients were similar to these other chronic
illness scores, which ranged from 71.2 to 85.9, 71.8 to
77.4, 76.8 to 85.6 and 68.5 to 77.6 for the physical,
A. M. McKenna et al.
emotional, social and school scores, respectively. The
previously noted exception of the emotional subscore
for our dialysis patients was similar to the scores
observed in healthy controls of Varni et al. [14]. This
suggests the PedsQLTM has generic validity in child-
hood chronic diseases, which we believe justifies its
use with our patient population. In each of the above
studies, the PedsQLTM validity was assessed using the
same healthy control population [14] as was employed
in the current study.
In summary HRQOL was rated lower by patients
with CKD than healthy children. In addition, parents
rated their child’s quality of life lower than the patients
themselves. Surprisingly, though not significantly
different, we found transplant patients generally rated
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themselves worse than children with other renal failure
treatments, while their caregivers rated them higher.
This raises the concern that caregivers’ perception of
improved HRQOL following transplantation is not
shared by their children. On the other hand, the higher
scores reported by children on dialysis compared with
their parents may be reassuring for caregivers, suggest-
ing HRQOL in these children may be better than
adults perceive. A larger sample size is required to
confirm the somewhat surprising and provocative
results reported in this study.
Acknowledgements. Thanks to Dr Nancy Young, for sharing her
expertise in quality of life research, and to Derek Stephens for his
assistance with statistical analyses.
Conflict of interest statement. None declared.
References
1. National Kidney Foundation. Kidney Disease Outcomes
Quality Initiative Clinical Practice Guidelines for Nutrition in
Chronic Renal Failure. II. Pediatric Guidelines. Am J Kidney
Dis 2000; 35: s105–s136
2. Chavers BM, Li S, Collins AJ, Herzog CA. Cardiovascular
disease in pediatric chronic dialysis patients. Kidney Int 2002;
62: 648–653
3. Mitsnefes M, Ho PL, McEnery PT. Hypertension and
progression of chronic renal insufficiency in children: a
report of the North American Pediatric Renal Transplant
Cooperative Study (NAPRTCS). J Am Soc Nephrol 2003;
14: 2618–2622
4. Garralda ME, Jameson RA, Reynolds JM, Postelwaithe RJ.
Psychiatric adjustment in children with chronic renal failure.
J Child Psychol Psychiatry 1988; 29: 79–90
5. Soliday E, Kool E, Lande MB. Psychosocial adjustment in
children with kidney disease. J Pediatr Psychol 2000; 25:
93–103
6. Eijsermans RM, Creemers DG, Helders PJ, Schroder CH.
Motor performance, exercise tolerance, and health-related
quality of life in children on dialysis. Pediatr Nephrol 2004;
19: 1262–1266
7. Manificat S, Dazord A, Cochat P, et al. Quality of life in
children and adolescents after kidney or liver transplantation:
child, parents and caregiver’s point of view. Pediatr Transplant
2003; 7: 228–235
8. Qvist E, Narhi V, Apajasalo M, et al. Psychosocial adjustment
and quality of life after renal transplantation in early
childhood. Pediatr Transplant 2004; 8: 120–125
Health-related quality of life in children with CKD
9. Gerson AC, Riley A, Fivush BA, et al. Assessing health status
and health care utilization in adolescents with chronic kidney
disease. J Am Soc Nephrol 2005; 16: 1427–1432
10. Reynolds JM, Garralda ME, Postelwaithe RJ, Goh D.
Changes in psychosocial adjustment after renal transplantation.
Arch Dis Child 1991; 66: 508–513
11. Varni JW, Burwinkle TM, Katz ER, Meeske K, Dickinson P.
The PedsQL in pediatric cancer: reliability and validity of the
pediatric quality of life inventory generic core scales, multi-
dimensional fatigue scale and cancer module. Cancer 2002; 94:
2090–2106
12. Chan KS, Mangione-Smith R, Burwinkle TM, Rosen M,
Varni JW. The PedsQL: reliability and validity of the short-
form generic core scales and asthma module. Med Care 2005;
43: 256–265
13. Varni JW, Burwinkle TM, Jacobs JR et al. The PedsQL in
type 1 and type 2 diabetes: reliability and validity of the
pediatric quality of life inventory generic core scales and type 1
diabetes module. Diabetes Care 2003; 26: 631–637
14. Varni JW, Seid M, Kurtin PS. PedsQLTM 4.0: reliability and
validity of the Pediatric Quality of Life InventoryTM version
4.0 generic core scales in healthy and patient populations.
Med Care 2001; 39: 800–812
15. Shrout PE, Fleiss JL. Intraclass correlations: uses in assessing
rater reliability. Psychol Bull 1979; 86: 420–428
16. Reynolds JM, Garralda ME, Jameson RA, Postelwaithe RJ.
How parents and families cope with chronic renal failure.
Arch Dis Child 1988; 63: 821–826
17. Luque-Coqui M, Chartt R, Tercero G et al. Self-esteem in
Mexican pediatric patients on peritoneal dialysis and kidney
transplantation. Nefrologia 2003; 23: 145–149
1905
18. Brossart DF, Clay DL, WIllson VL. Methodological and
statistical considerations for threats to internal validity in
pediatric outcome data: response shift in self report outcomes.
J Pediatr Psychol 2002; 27: 97–107
19. Achenbach TM, McConaughy SH, Howell CT. Child/
adolescent behavioral and emotional problems: implications
of cross-informant correlations for situational specificity.
Psychol Bull 1987; 101: 213–232
20. Varni JW, Katz ER, Seid M. The pediatric cancer quality of
life inventory (PCQL): I. Instrument development, descriptive
statistics and cross-informant variance. J Behav Med 1998; 21:
179–204
21. Holmbeck GN, Li ST, Schurman JV, Friedman D,
Coakley RM. Collecting and managing multisource and
multimethod data in studies of pediatric populations.
J Pediatr Psychol 2002; 27: 5–18
22. Eiser C, Morse R. Can parents rate their child’s health-related
Downloaded from https://academic.oup.com/ndt/article/21/7/1899/1821890 by guest on 26 March 2024
quality of life? Results of a systematic review. Qual Life Res
2001; 10: 347–357
23. Gokal R, Figueras M, Olle A, Rovira J, Badia X. Outcomes
in peritoneal dialysis and haemodialysis – a comparative
assessment of survival and quality of life. Nephrol Dial
Transplant 1999; 14: 24–30
24. Chassany O, Sagnier P, Marquis P, Fullerton S, Aaronson N.
Patient-reported outcomes: the example of health-related
quality of life—a European guidance document for the
improved integration of health-related quality of life asessment
in the drug regulatory process. Drug Inf J 2002; 36: 209–238
25. Clarke SA, Eiser C. The measurement of health-related quality
of life (QOL) in paediatric clinical trials: a systematic review.
Health Qual Life Outcomes 2004; 2: 66
Received for publication: 19.12.05
Accepted in revised form: 15.2.06