hrqol patient vs. carregiver

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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 theirquality of life. Our objective was to compare health-related quality of life (HRQOL) in children withdifferent stages of CKD to each other and to a controlpopulation.Methods. A cross-sectional assessment of HRQOL forphysical, emotional, social and school domains wasperformed using the PedsQLTM Generic Core Scale.Data were collected from 20 children with chronicrenal insufficiency (CRI; creatinine >200mmol/l), 12on maintenance haemodialysis or peritoneal dialysis(DIAL) and 27 with renal transplants (TX). Caregiver

proxy reports were obtained for CRI (n¼

20), DIAL(n¼17) and TX (n¼21). Between-group differenceswere assessed with ANOVA for the CKD groups;t-tests compared our CKD samples with controls.Results. Children with CKD scored lower than thecontrols in all subscales, however, only TX comparedwith controls was significant (P<0.02). DIAL childrenscored equal to or higher than the TX group inall domains. Analysis of covariance with numberof medications as covariate yielded a significantresult for the physical subscale (F ¼8.95, df ¼3, 53,P¼0.004). Proxy caregiver scores were lower thanpatient scores in all four domains.Conclusions. Children with CKD rate their HRQOL

lower than the healthy controls do. It may bereassuring to caregivers that children on dialysisrate their HRQOL higher than would be expected.However, it is of some concern that caregiver percep-tion of improved HRQOL following transplantationwas not shared by their children in the present study.

Keywords: chronic renal disease; dialysis; health-related quality of life; paediatric; renal transplant

Introduction

Children with chronic renal disease require strictdietary and lifestyle modifications, and frequentmonitoring by a medical team [1]. Their associatedcardiovascular [2] and physical complications [3],neuro-developmental disorders [4] and psychosocialproblems [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, performedin-group comparisons amongst patients on differenttreatment modalities [9,10]. In the current study, theHRQOL in patients with chronic renal disease aged2–18 was compared across the modalities of chronicrenal insufficiency (CRI), end-stage renal disease(ESRD) requiring maintenance dialysis (DIAL), andpatients with a renal transplant (TX). It was hypoth-esized that children on haemodialysis (HD) andperitoneal dialysis (PD) would have lower HRQOLscores than children with CRI or renal transplantrecipients. We also predicted that parents of childrenreceiving dialysis would rate their child’s HRQOLlower than the parents of children with CRI or renal

transplant recipients.

Methods

Samples

Children aged 2–18 years were recruited from nephrologyclinics 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 verbalassent from patients under 16 years of age, where appropriate.

Correspondence and offprint requests to: Dr Denis F. Geary, MBFRCP(C), Division of Nephrology, Hospital for Sick Children,Toronto M5G 1X8, ON, Canada. Email: [email protected]

ß The Author [2006]. Published by Oxford University Press on behalf of ERA-EDTA. All rights reserved.For Permissions, please email: [email protected]



Patients were eligible if they had CRI, defined as plasmacreatinine >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 hadbeen hospitalized for a non-renal comorbidity within the past30 days; (ii) received a renal transplant within the past 3

months; (iii) initiated or changed dialysis modalities withinthe past 30 days; or (iv) had experienced a significant life eventunrelated 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 performedusing the Paediatric Inventory of Quality of Life (PedsQLTM

Version 4.0) Core Scales. The PedsQLTM

was designed tomeasure HRQOL in children and adolescents, and has beenvalidated in children with a variety of chronic illnessesincluding 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) bycaregiver proxy-report only, young child (5–7 years), older

child (8–12 years) and teen (13–18 years). If the patient wasidentified as being developmentally delayed, the PedsQLTM

was administered according to their developmental age asdetermined by the responsible physician’s assessment.

Surveys were administered once at an age-appropriate levelto each patient. If a patient or parent was unable to read thePedsQLTM due to a language barrier, a certified interpreterwas used. All self-report forms for young children (5–7 years)

and those of older patients with visual impairments wereadministered 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-agedchildren, patient or parent interviews were conducted todetermine the child’s schooling level, school days missed inthe previous 6 months and whether the child required special

education (supplementary tutoring or an individualizededucation 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 usingStudent’s t-test. This control sample has been used tocompare 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 threesample groups: CRI, dialysis and transplant. Between-group

differences on each of the four subscales were comparedusing analysis of variance (ANOVA). The ANOVA was alsoused to compare each subscale between children and their

caregivers. For all analyses, a Bonferroni correction formultiple 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 significantnon-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 toevaluate their effect on HRQOL: age at the time of

questionnaire, age at the diagnosis of CKD, number of medications, number of outpatient clinic visits in the past6 months, duration of current modality and plasma creatinine(CRI and transplant children only).

Inter-rater reliability. Inter-rater reliability between parentand child was assessed with the intraclass correlationcoefficient (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 valueof 0 would signify complete disagreement between raters.

Results

A total of 64 patients with CKD and/or their primarycaregivers were recruited from June to August 2005.Of these patients, 17 were on dialysis, 20 had CRI and27 had received a renal transplant. Self-report data werecollected 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 receiveda renal transplant (one patient was too young). Proxydata were collected for 17 caregivers of children ondialysis, 20 caregivers of children with CRI and 21caregivers of transplanted patients (six children werenot accompanied by a caregiver to their clinic appoint-ment). Demographic and clinical information obtainedby patient interview and medical chart review arepresented in Table 1. Reasons for admission intransplant patients were usually unrelated to transplantrejection; of the 10 patients hospitalized in thepast 6 months, only three had a kidney biopsy forsuspicion 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’shealthy paediatric sample by Student’s t-test, arepresented in Table 3. All the patients in the presentstudy, particularly the transplant patients, scored lowerthan the Varni controls.

Mean scores in each PedsQLTM subscale areshown by treatment modality for child self-report andparent proxy-report in Tables 3 and 4. The greatest

1900 A. M. McKenna et al .



between-group difference for the patients was aninferior emotional score for renal transplant patients

compared with those on maintenance dialysis.However, this difference was not significant when aBonferroni correction was applied. Also, though notstatistically significant, it is noteworthy that transplantpatients scored lower than both CRI and dialysispatients in all domains except the social subscale.

There were no between-group differences in HRQOLscores for the following: mothers (n¼42) comparedwith fathers (n¼14, P>0.32), PD (n¼4) vs HD (n¼8,P>0.03) or children with (n¼12) and without (n¼46)a urological diagnosis, whether or not they requiredintermittent catheterization (n¼10; P>0.18).

It is noteworthy that the social subscore differencebetween the PD and HD children (t¼À2.75, df ¼10,P¼0.03) did not withstand Bonferroni correction.

Caregivers scored their children lower in almost allcategories than the child self-reports, as illustrated inFigure 1. Also, in contrast to the child self-reports,caregivers assigned the lowest scores to children ondialysis. These differences between patients and care-giver proxy-reports were not significant when analysedby ANOVA.

Evaluation of clinical parameters

The ANCOVA for the following clinical variables—ageat the time of questionnaire, age at the diagnosis of CKD, number of medications, number of outpatientclinic visits in the past 6 months, plasma creatinine andduration of current modality—revealed only onedifference. The only significant finding was for thenumber of medications, which when included in the

model resulted in a significant between-group differencefor the physical subscale score (F ¼8.95, df ¼3, 53,P¼0.004). Further investigation revealed a significantnegative correlation between number of medicationsa patient was on and their physical subscale score(R¼À0.38, P<0.0001).

There were 12 children identified as having asignificant non-renal comorbidity (see Table 2), how-ever, only 10 of them were able to fill out a report(two children were too young and only theproxy questionnaire was completed). A significantdifference was observed for the social subscale between

Table 1. Patient demographics

Clinical variable CRI (n¼20) DIAL (n¼ 17) TX (n¼27) P-valuea

Mean (SD) age 13.2 (3.5) 12.7 (3.5) 14.0 (2.8) 0.432–4 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) 0.39Mean (SD) length on modality (months) 57.7 (74.4) 25.7 (22.7) 58.6 (47.3) 0.11n (%) school-age patients in school full-time 17 (85.0) 11 (78.6) 24 (88.9) 0.68Mean (SD) school days missed in the past 6 months 11.9 (12.0) 22.1 (17.1) 13.1 (15.9) 0.16n (%) special education 7/17 (41.1) 4/10 (40.0) 8/20 (40.0) 0.99Mean (SD) number of medications 6.2 (2.4) 8.3 (2.9) 7.4 (2.8) 0.07Mean (SD) days hospitalized in the past month 0 (–) 3.6 (7.0) 0.5 (1.9) 0.01n (%) patients hospitalized in the last 6 months 2 (10.0) 15 (88.2) 11 (40.7) 0.0001Mean (SD) days hospitalized in the last 6 months 0.65 (2.1) 15.2 (20.5) 7.8 (22.9) 0.06Mean (SD) clinic visits in the last 6 months 5.6 (3.3) 35.4 (29.7) 15.8 (15.7) 0.0001Mean (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) 0.68n (%) with urological problems 4 (20) 2 (16.7) 6 (23.1) 1.0n (%) 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.aFrequency data were assessed with chi-square or Fisher’s exact test where expected frequencies were <5; group mean differences wereassessed with ANOVA.bComparison were assessed using Student’s t-test as creatinine is an estimation of kidney function for CRI and TX patients only; forDIAL patients, creatinine is a measure of dialysis adequacy.

Table 2. Significant non-renal comorbidities

Modality Comorbidity

CRI Developmental delayCRI Blackfan Diamond syndromeCRI Developmental delay, G tube feeds

CRI Acute lymphoblastic leukaemiaDIAL Developmental delay, blindDIAL Liver transplantTX Retinitis pigmentosaTX Developmental delayTX BlindTX BlindTX Developmental delayTX Cloacal extrophy, colostomy

CRI, chronic renal insufficiency; DIAL, children on maintenancedialysis; TX, renal transplant recipients.

Health-related quality of life in children with CKD 1901



children with (mean±SD¼62.0±29.0) and without(mean±SD¼81.1±17.6) non-renal comorbidities(P¼0.008). This finding remained significant evenwhen a Bonferroni adjustment for multiple com-

parisons was applied. No between-group differenceswere observed for the physical, emotional or schoolsubscale scores (P>0.39).

Inter-rater reliability

The ICC coefficient between parent and child reportswas calculated to be 0.63, which indicates a modestagreement on PedsQLTM scores between children andtheir parents.

Discussion

This study demonstrates that HRQOL assessed bythe PedsQLTM is lower in patients with CKD thanhealthy children. All three groups of patients with CKDreported 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 hadhypothesized that patients with ESRD requiring main-tenance dialysis would score lowest among the samplegroups in the present study. However, despite theirincreased 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 notachieve statistical significance. We did observe asignificant effect of medications on the physical sub-

score, as the more medications a child was on, the lowerthe score. This finding possibly reflects that childrenon many medications are experiencing a greater severityof illness and/or more illness-related complications,as only the physical score was affected. If being onmany medications were deemed to be inconvenientor a constant reminder of a child’s chronic condition,one would expect the emotional score to be affectedby this variable as well. It was also noteworthy thatparents rate their child’s quality of life lower than thepatient themselves, and this was particularly so forthe parents of children on dialysis. The proxy-reportstherefore supported our hypothesis that children ondialysis have the poorest HRQOL. It should be

reassuring for parents and caregivers that their percep-tions of a patient’s HRQOL may underestimate thepatient’s own perceptions.

The current study and the study by Reynolds et al .[16] are the only two reports of HRQOL in youngchildren as well as adolescents with CRI, dialysisand transplant recipients from a single centre. In thepresent study, we used the PedsQLTM measure becauseof its validity across a wide spectrum of chronicchildhood diseases, its ease of performance and itsability to evaluate HRQOL in young children as wellas adolescents. Direct comparison with other studies

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

Subscale Varni controls [14] (n¼ 611)a CRI (n¼ 20) DIAL (n¼ 17) TX (n¼21)

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.an ranges from 611 (school) to 718 (emotional), depending on the subscale.bControls vs CRI, DIAL and TX: P<0.0001.cControls vs CRI, DIAL and TX: P<0.0009.dControls vs CRI, DIAL and TX: P<0.0001.eControls vs CRI, DIAL and TX: P<0.0001.f TX vs DIAL: P¼ 0.08.

Table 3. Between-group comparisons: mean (SD) PedsQLTM child self-report scores

Subscale Varni controls [14] (n¼ 386)a CRI (n¼ 20) DIAL (n¼ 12) TX (n¼26)

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.an ranges from 386 (school) to 400 (physical and emotional), depending on the subscale.bControls vs CRI: P¼0.02; Controls vs DIAL: P¼ 0.03; Controls vs TX: P¼0.0009.cControls vs TX: P¼ 0.0002.dControls vs TX: P¼0.01.eControls vs CRI: P¼0.0009; Controls vs DIAL: P¼0.02; Controls vs TX: P¼ 0.0001.f TX vs DIAL: P¼ 0.02.




is difficult, because most used different assessmentmeasures. Nonetheless, our findings are consistent withEijsermans et al . [6] who reported no difference inHRQOL between children on dialysis and those whohave received a renal transplant, and Qvist et al . [8] whoreported that transplant recipients had lower scoresthan controls for attention and overall HRQOL.However, results from the current study are notconsistent with three other studies that comparedHRQOL in children with CKD. Manificat et al . [7]reported no difference on transplanted children’sHRQOL compared with healthy controls. In theirmulticentre study, Gerson et al . [9] reported that 21

adolescent patients (aged 10–18 years) on dialysisdemonstrated poorer activity levels, home safety andincreased 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 specialfriend and had a lower self-esteem than CRI, transplantand controls and that children with CRI and ondialysis had higher depression scores than transplantor control children [10]. Small sample sizes and variablemeasures of HRQOL may contribute to the divergenceof data in this population.

The results of our analyses illustrated some surpris-ing trends. Emotional functioning saw the mostdiversification by treatment group in self-report scoresand, unexpectedly, the emotional scores of dialysispatients were similar to those of the Varni et al . [14]controls. We also found that the rates of non-renalcomorbidities were lower in the dialysis group than inthe transplant or CRI groups. Although this differencewas not significant, it is possible that this could havecontributed to lower overall scores in the transplantgroup. Though fears about kidney rejection could playa role in lower HRQOL scores for transplant patients,only 3/27 children in the transplant group had been

hospitalized for suspected rejection in the previous6 months. The elevated perception of emotional statein dialysis patients when compared with otherswith chronic renal disease has also been reported byLuque-Coqui et al . [17] who compared self-esteem inpaediatric peritoneal dialysis patients vs renal trans-plant recipients. An explanation for this unexpectedresult might be found in the ‘response shift’, a theorygenerated to explain why paediatric oncology patientsreport increasing positive feelings over a stable oreven deteriorating clinical course [18]. The responseshift suggests that patients’ internal standards change

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Physical Emotional Social School



Probands (n =20) Parents (n =20) Paediatric controls (n =386*)

*n for the Varni et al . controls ranges from 386(school) to 400 (physical and emotional),depending on the subscale

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Probands (n =12) Parents (n =17) Paediatric controls (n =386*)

A CRI: controls, probands and parents B Dialysis: controls, probands and parents

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90

100Probands (n =26) Parents (n =21) Paediatric controls (n =386*)

C Transplant recipients: controls, probands and parents

Fig. 1. PedsQLTM scores for controls, probands and parents. In all three graphs, the gray triangles represent the mean scores of the Varniet 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).




as they adapt to their diagnosis and medical surround-ings, yielding higher self-reported HRQOL as livingwith illness becomes routine. As the current study isa cross-sectional examination of quality of life with asmall sample, concrete inferences regarding responseshift in paediatric dialysis patients cannot be made;however, the subject warrants future prospectiveinvestigation.

Inter-rater reliability between caregivers andpatients, assessed by the ICC, yielded a modestcorrelation of 0.63 [15]. Children rated their HRQOLhigher than their caregivers perceived it to be. A lackof concordance between children and caregivers hasbeen reported in healthy [19] and chronically ill [20]children. As parent and child data may reflectindividual standards, even when evaluating the samesubject, this discrepancy is not surprising. In evaluatingproxy-reports of HRQOL in healthy children,Achenbach et al . [19] found a significant correlationbetween ratings of mothers and fathers and in thepresent study we reported no significant differencebetween the scores of mothers compared with fathers.Holmbeck and colleagues [21] suggest that a child’sperceptions of health status might mirror theirparent’s only when they mature cognitively to thelevel of their parent. A review of parental proxy-reportin a child’s HRQOL suggests that inter-rater agreementon observable factors such as physical functioningmay be more consistent than experienced factorssuch as emotional and social functioning, though theauthors recommended that all measures of paediatricquality of life should include both self- and proxy-reports [22].

A limitation of the current study is the small samplesize. To increase the power of our analyses, PD and HD

patients were grouped together (n¼

17), although adultstudies have suggested that adults on home HD and PDhave higher HRQOL than in-centre HD patients [23].In the current study, no significant differences wereobserved for children on HD compared with PD.Significant differences between our treatment groupsmight have been detected if a disease-specific measureof HRQOL had been used, as disease-specific measuresare more responsive to clinical changes than genericmeasures [24]. However, we are not aware of anyvalidated HRQOL measure for children with CKD.

The use of generic forms for measurement of HRQOL is recommended for comparison of patientswith different diseases, or comparison between children

with chronic disease and a healthy population [25].In the current study, it allowed us to compare ourpopulation of children with CKD to a previouslyreported control population. However, it is acknow-ledged that the PedsQLTM has not been validatedspecifically in children with chronic renal disease.Nonetheless, it has been validated in children withmany different chronic illnesses including cancer,asthma and diabetes mellitus [11–13]. The scores of our chronic patients were similar to these other chronicillness scores, which ranged from 71.2 to 85.9, 71.8 to77.4, 76.8 to 85.6 and 68.5 to 77.6 for the physical,

emotional, social and school scores, respectively. Thepreviously noted exception of the emotional subscorefor our dialysis patients was similar to the scoresobserved in healthy controls of Varni et al . [14]. Thissuggests the PedsQLTM has generic validity in child-hood chronic diseases, which we believe justifies itsuse with our patient population. In each of the abovestudies, the PedsQLTM validity was assessed using the

same healthy control population [14] as was employedin the current study.

In summary HRQOL was rated lower by patientswith CKD than healthy children. In addition, parentsrated their child’s quality of life lower than the patientsthemselves. Surprisingly, though not significantlydifferent, we found transplant patients generally ratedthemselves worse than children with other renal failuretreatments, while their caregivers rated them higher.This raises the concern that caregivers’ perception of improved HRQOL following transplantation is notshared by their children. On the other hand, the higherscores reported by children on dialysis compared withtheir parents may be reassuring for caregivers, suggest-ing HRQOL in these children may be better thanadults perceive. A larger sample size is required toconfirm the somewhat surprising and provocativeresults reported in this study.

Acknowledgements. Thanks to Dr Nancy Young, for sharing herexpertise in quality of life research, and to Derek Stephens for hisassistance 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–s1362. 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 andprogression of chronic renal insufficiency in children: a

report of the North American Pediatric Renal Transplant

Cooperative Study (NAPRTCS). J Am Soc Nephrol 2003;

14: 2618–26224. 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 inchildren 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 inchildren 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 adjustmentand quality of life after renal transplantation in early

childhood. Pediatr Transplant 2004; 8: 120–125




9. Gerson AC, Riley A, Fivush BA, et al . Assessing health statusand 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 1diabetes module. Diabetes Care 2003; 26: 631–637

14. Varni JW, Seid M, Kurtin PS. PedsQLTM 4.0: reliability andvalidity 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 assessingrater 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

18. Brossart DF, Clay DL, WIllson VL. Methodological andstatistical 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

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. Outcomesin 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 theimproved 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 qualityof life (QOL) in paediatric clinical trials: a systematic review.Health Qual Life Outcomes 2004; 2: 66

Received for publication: 19.12.05Accepted in revised form: 15.2.06


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