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1.  Health-Related Quality of Life in Children and Adolescents with Sickle Cell Disease 
Objective
To assess health-related quality of life (HRQOL) in children and adolescents with sickle cell disease (SCD).
Design, Setting, and Participants
The PedsQL™ 4.0 Generic Scales, a multidimensional self-report instrument that has been shown to be valid and reliable for use in children and adolescents with chronic illness, consists of 23 items that assess physical, emotional, social, and school functioning. Questionnaires were administered to 124 children and adolescents (aged 8-18 years, child self-report) with SCD (100 sickle cell anemia [SS], 24 sickle beta zero thalassemia [Sβ0thal]) and their parents (parent-proxy report). Summary scores for children’s and parents’ ratings of overall HRQOL and psychosocial health and subscale scores for physical, emotional, social, and school functioning were compared to published data for healthy children. Both summary and subscale scores for children with SCD were also compared to those of their parents.
Results
Children with SCD and their parents rated overall HRQOL and all sub-domains of HRQOL lower than ratings of healthy children and their parents (p < .001). Children with SCD rated their own HRQOL significantly better than their parents for overall HRQOL and all sub-domains (p <.001) except emotional functioning (p = .06).
Conclusions
Children with SCD and their parents perceived overall HRQOL and all HRQOL sub-domains to be lower than scores reported in healthy children. Therefore, successful therapeutic efforts to improve HRQOL could represent important advances in the health of children with SCD.
doi:10.1016/j.pedhc.2009.12.006
PMCID: PMC3124665  PMID: 21700135
Quality of Life; Health Related Quality of Life; Sickle Cell Disease; Chronic Illness; Children and Adolescents
2.  Spectacle wear in children reduces parental health-related quality of life 
Purpose
To investigate whether spectacle wear in children affects responses on the Intermittent Exotropia Questionnaire (IXTQ) or the Pediatric Quality of Life Inventory (PedsQL).
Methods
We recruited 49 children, median age 8 years (range, 5–13), presenting with visual acuity 20/40 or better and an otherwise normal eye examination (no strabismus), who either had no refractive error (n = 29) or had refractive error corrected with spectacles (n = 20). The IXTQ and PedsQL were completed, each comprising a child report (Child IXTQ, Child PedsQL) and a parent proxy report (Proxy IXTQ, Proxy PedsQL). In addition, the IXTQ contains a parent self-report (Parent IXTQ). Each questionnaire is scored from 0 (worst health-related quality of life [HRQOL]) to 100 (best HRQOL). Median scores were compared using Wilcoxon rank-sum tests.
Results
Child IXTQ and Proxy IXTQ scores were similar between groups; nevertheless, Parent IXTQ scores were lower for spectacle wearers (90.4 vs 97.1, p = 0.01). Parent IXTQ questions that scored lower in the spectacle group were related to parental worry about permanent damage to their child’s eyes, longterm eyesight, surgery, self-consciousness, and teasing. The PedsQL composite scores and all subscale scores were similar between spectacle wearers and nonspectacle wearers, both for Child PedsQL and Proxy PedsQL.
Conclusions
Parental HRQOL, measured using the Parent IXTQ, was lower for children wearing spectacles than for children who did not wear spectacles. There was no difference between spectacle and no-spectacle groups using either Child IXTQ, Proxy IXTQ, Child PedsQL, or Proxy PedsQL.
doi:10.1016/j.jaapos.2010.11.003
PMCID: PMC3058787  PMID: 21315631
3.  Impaired Health-Related Quality of Life in Preschoolers With Obesity 
Journal of Pediatric Psychology  2012;37(10):1148-1156.
Objectives To examine whether health-related quality of life (HRQOL) for treatment-seeking preschoolers with obesity (N = 60) differed from preschoolers in a nonclinical comparison sample (N = 457). Methods Parents in both samples completed the parent-proxy form of the Pediatric Quality of Life Inventory (PedsQL). Between-group comparisons were conducted to examine differences for all scales and summary scores of the PedsQL. Results Parent proxy-reported HRQOL was significantly lower for treatment-seeking preschoolers with obesity for all scales and summary scores except School Functioning. Differences on the Total Scale score met the criterion for being a clinically important difference. Conclusions Our study suggests treatment-seeking families perceive worse HRQOL for children with obesity as early as the preschool years. Discussion of HRQOL may be a more effective strategy for health care professionals in broaching the topic of weight with parents and identifying families who may be more receptive to weight management suggestions for preschoolers.
doi:10.1093/jpepsy/jss090
PMCID: PMC3481780  PMID: 22976509
obesity; quality of life; weight management
4.  Comparison of quality of life instruments in childhood intermittent exotropia 
Purpose
To compare 2 health-related quality of life (HRQOL) instruments: the condition-specific intermittent exotropia questionnaire (IXTQ) and the generic Pediatric Quality of Life Inventory (PedsQL) questionnaire in children with intermittent exotropia.
Methods
Fifty-one children with intermittent exotropia (median, 7; range, 5–16 years) were recruited from outpatient clinics with one of their parents. All children completed age-appropriate Child IXTQ (12 items) and Child PedsQL (23 items). Parents completed parallel Proxy IXTQ and Proxy PedsQL questionnaires (parent assessment of child’s HRQOL). Possible scores ranged from 0 to 100 (worst to best HRQOL). Normal thresholds were defined using the 5th percentile in a control group of 47 normal non-strabismic children. Proportions scoring below normal on each questionnaire were compared. Median scores in intermittent exotropia and control groups were also compared.
Results
More scores were subnormal using Proxy IXTQ than Proxy PedsQL (55% vs 18%, p = 0.0004). Using Child questionnaires, similar proportions scored below normal (IXTQ 8% vs PedsQL 14%, p = 0.3). Median scores were lower for intermittent exotropia children compared to controls using Child IXTQ (83 vs 92; p = 0.04), Proxy IXTQ (81 vs 98; p < 0.0001), and Proxy PedsQL (p = 0.04), but not using Child PedsQL (p = 0.3).
Conclusions
The Proxy IXTQ detects reduced HRQOL related to intermittent exotropia more often than the Proxy PedsQL. There were few subnormal scores on Child IXTQ and Child PedsQL. Children with intermittent exotropia scored, on average, lower than controls using the IXTQ, but most individual scores fell within the normal range. The IXTQ may prove useful for clinical assessment of intermittent exotropia.
doi:10.1016/j.jaapos.2010.01.011
PMCID: PMC2925436  PMID: 20417138
5.  Health related quality of life in Middle Eastern children with beta-thalassemia 
BMC Blood Disorders  2012;12:6.
Background
Thalassemia is a common disorder worldwide with a predominant incidence in Mediterranean countries, North Africa, the Middle East, India, Central Asia, and Southeast Asia. Whilst substantial progress has been made towards the improvement of Health related quality of life (HRQoL) in western countries, scarce evidence-based data exists on HRQol of thalassemia children and adolescents living in developing countries.
Methods
We studied 60 thalassemia children from Middle Eastern countries with a median age of 10 years (range 5 to 17 years). HRQoL was assessed with the Pediatric Quality of Life Inventory (PedsQL) 4.0. The Questionnaire was completed at baseline by all patients and their parents. The agreement between child-self and parent-proxy HRQoL reports and the relationship between HRQoL profiles and socio-demographic and clinical factors were investigated.
Results
The scores of parents were generally lower than those of their children for Emotional Functioning (mean 75 vs 85; p = 0.002), Psychosocial Health Summary (mean 70.3 vs 79.1; p = 0.015) and the Total Summary Score (mean 74.3 vs 77.7 p = 0.047). HRQoL was not associated with ferritin levels, hepatomegaly or frequency of transfusions or iron chelation therapy. Multivariate analysis showed that a delayed start of iron chelation had a negative impact on total PedsQL scores of both children (p = 0.046) and their parents (p = 0.007).
Conclusions
The PedsQL 4.0 is a useful tool for the measurement of HRQoL in pediatric thalassemia patients. This study shows that delayed start of iron chelation has a negative impact on children’s HRQoL.
doi:10.1186/1471-2326-12-6
PMCID: PMC3496588  PMID: 22726530
Quality of life; Thalassemia; PEDsQL 4.0
6.  Measuring health-related quality of life in young adolescents: Reliability and validity in the Norwegian version of the Pediatric Quality of Life Inventory™ 4.0 (PedsQL) generic core scales 
Background
Health-Related Quality of Life (HRQOL) studies concerning children and adolescents are a growing field of research. The Pediatric Quality of Life Inventory (PedsQL™) is considered as a promising HRQOL instrument with the availability of age appropriate versions and parallel forms for both child and parents. The purpose of the current study was to evaluate the psychometric properties of the Norwegian translation of the Pediatric Quality of Life Inventory (PedsQL™) 4.0 generic core scale in a sample of healthy young adolescents.
Methods
A cross-sectional study of 425 healthy young adolescents and 237 of their caregivers participating as a proxy. Reliability was assessed by Cronbach's alpha. Construct validity was assessed using exploratory factor analysis and by exploring the intercorrelations between and among the four PedsQL subscales for adolescents and their parents.
Results
All the self-report scales and proxy-report scales showed satisfactory reliability with Cronbach's alpha varying between 0.77 and 0.88. Factor analysis showed results comparable with the original version, except for the Physical Health scale. On average, monotrait-multimethod correlations were higher than multitrait-multimethod correlations. Sex differences were noted on the emotional functioning subscale, girls reported lower HRQOL than boys.
Conclusion
The Norwegian PedsQL is a valid and reliable generic pediatric health-related Quality of Life measurement that can be recommended for self-reports and proxy-reports for children in the age groups ranging from 13–15 years.
doi:10.1186/1477-7525-4-61
PMCID: PMC1584218  PMID: 16972987
7.  Health-Related Quality of Life In Two Itinerant Samples: Carnival and Migrant Farm Worker Children 
Pediatric nursing  2009;35(3):149-188.
The document Healthy People 2010 sets a national health care agenda that includes reducing health disparities and improving quality of life. This study evaluated health-related quality of life (HRQOL) in children aged 2 to 12 years being raised in two itinerant populations: traveling carnival children (n = 33) and migrant farm worker children (n = 48), and compared their outcomes to each other and to findings in published literature. The study sample utilized cluster sampling from outdoor amusement companies (carnivals) and agricultural farms who agreed for the researcher to enter their premises and speak with their workers. The PedsQL™ Generic Core Scales, including a child self-report and parent-proxy, measured HRQOL. HRQOL of the itinerant children did not differ from that of a more geographically stable California sample. The carnival children’s mean scores were higher than the migrant farm worker children’s scores on 7 out of 12 subscales, but the differences were not statistically significant.
PMCID: PMC2880387  PMID: 19681375
8.  Health-related quality of life for children with rare diagnoses, their parents’ satisfaction with life and the association between the two 
Purpose
To examine children’s health-related quality of life and parents’ satisfaction with life and explore the association between the two in families where a child has a rare disorder.
Methods
We used a cross-sectional study design. A questionnaire was sent to parents of 439 school children (6–18 years) with congenital rare disorders. Children’s health-related quality of life (HRQOL) was examined by Pediatric Quality of Life InventoryTM 4.0 (PedsQL) Norwegian version. Satisfaction with life was examined by Satisfaction with Life Scale (SWLS).
Results
The response rate was 48% (n = 209). The average age of the children was 12 years and 50% were girls. The parents scored their children with reduced physical, emotional, social and school functioning. The reductions were greatest in the physical area. Parents scored average to high on SWLS but significantly lower than the general Norwegian population. There was a positive association between parental SWLS and the children’s social functioning and school functioning.
Conclusion
Children with congenital, rare disorders often require assistance from many parts of the public service system. Caring for their physical needs should not conflict with their educational and social needs. It is important that the children’s school-life is organized so that the diagnosis does not interfere with the children’s education and social life more than necessary.
doi:10.1186/1477-7525-11-152
PMCID: PMC3844436  PMID: 24010895
School children; Disabilities; Rare disorders; Children’s health related quality of life; PedsQL; Parent’s satisfaction of life; SWLS
9.  Health-related quality of life in parents of children with intermittent exotropia 
Purpose
To assess the health-related quality of life (HRQOL) of parents of children with intermittent exotropia using the newly developed condition-specific Parent Intermittent Exotropia Questionnaire (Parent IXTQ) and the generic PedsQL Family Impact Module (PedsQL FIM) and to compare the performance of both instruments.
Methods
One parent was recruited for each of 59 children with intermittent exotropia (age range, 3 to 16; median, 7 years) and for each of 29 visually normal children (age range, 5 to 13; median, 8 years). The parent completed the Parent IXTQ and the PedsQL FIM. For each questionnaire, we compared median HRQOL scores between the intermittent exotropia group and visually normal group. We also calculated normal thresholds, which were defined as the 5th percentile score in the cohort of parents of visually normal children. The proportion of subnormal scores between questionnaires in parents of children with intermittent exotropia was compared.
Results
The Parent IXTQ score was worse in the intermittent exotropia group than in the visually normal group (70.6 vs 94.1, p < 0.0001), whereas the PedsQL FIM scores were similar (97.9 vs 95.8, p = 0.8). More parents scored below normal using the Parent IXTQ than using the PedsQL FIM (31% vs 12%; p = 0.008, McNemar's test).
Conclusions
The Parent IXTQ detects subnormal HRQOL in parents of children with intermittent exotropia more often than the PedsQL FIM. It is possible that parental worry may influence management decisions in children with intermittent exotropia and therefore parental HRQOL is worthy of further study.
doi:10.1016/j.jaapos.2010.11.020
PMCID: PMC3098901  PMID: 21419677
10.  Parent proxy-report of their children's health-related quality of life: an analysis of 13,878 parents' reliability and validity across age subgroups using the PedsQL™ 4.0 Generic Core Scales 
Background
Health-related quality of life (HRQOL) measurement has emerged as an important health outcome in clinical trials, clinical practice improvement strategies, and healthcare services research and evaluation. While pediatric patient self-report should be considered the standard for measuring perceived HRQOL, there are circumstances when children are too young, too cognitively impaired, too ill or fatigued to complete a HRQOL instrument, and reliable and valid parent proxy-report instruments are needed in such cases. Further, it is typically parents' perceptions of their children's HRQOL that influences healthcare utilization. Data from the PedsQL™ DatabaseSM were utilized to test the reliability and validity of parent proxy-report at the individual age subgroup level for ages 2–16 years as recommended by recent FDA guidelines.
Methods
The sample analyzed represents parent proxy-report age data on 13,878 children ages 2 to 16 years from the PedsQL™ 4.0 Generic Core Scales DatabaseSM. Parents were recruited from general pediatric clinics, subspecialty clinics, and hospitals in which their children were being seen for well-child checks, mild acute illness, or chronic illness care (n = 3,718, 26.8%), and from a State Children's Health Insurance Program (SCHIP) in California (n = 10,160, 73.2%).
Results
The percentage of missing item responses for the parent proxy-report sample as a whole was 2.1%, supporting feasibility. The majority of the parent proxy-report scales across the age subgroups exceeded the minimum internal consistency reliability standard of 0.70 required for group comparisons, while the Total Scale Scores across the age subgroups approached or exceeded the reliability criterion of 0.90 recommended for analyzing individual patient scale scores. Construct validity was demonstrated utilizing the known groups approach. For each PedsQL™ scale and summary score, across age subgroups, healthy children demonstrated a statistically significant difference in HRQOL (better HRQOL) than children with a known chronic health condition, with most effect sizes in the medium to large effect size range.
Conclusion
The results demonstrate the feasibility, reliability, and validity of parent proxy-report at the individual age subgroup for ages 2–16 years. These analyses are consistent with recent FDA guidelines which require instrument development and validation testing for children and adolescents within fairly narrow age groupings and which determine the lower age limit at which reliable and valid responses across age categories are achievable. Even as pediatric patient self-report is advocated, there remains a fundamental role for parent proxy-report in pediatric clinical trials and health services research.
doi:10.1186/1477-7525-5-2
PMCID: PMC1769359  PMID: 17201923
11.  Health-Related Quality of Life in Pediatric Minor Injury 
Objective
To evaluate the feasibility, reliability, validity, and responsiveness of the Pediatric Quality of Life Inventory 4.0 Generic Core Scales (PedsQL) in the first 2 weeks after pediatric emergency department care of minor injury.
Design
Prospective cohort study.
Setting
Pediatric hospital emergency department.
Participants
Children and adolescents with minor injury (n = 334).
Main Outcome Measures
Child- and parent-reported clinical outcomes and PedsQL scale scores.
Results
The PedsQL had good to excellent internal consistency reliability (α range, 0.73–0.93). For each day that the clinical symptoms persisted, there were consistent decreases in mean health-related quality of life (HRQOL) scores (validity testing). There were significantly greater negative changes in mean HRQOL scores for fractures vs soft-tissue injuries and for lower vs upper extremity injuries. Clinical outcomes categorized as poor had large negative changes in HRQOL not seen in good outcome groups. Distribution-based indicators of change supported good responsiveness (effect sizes for the physical summary score, 0.01–2.44; group differences at follow-up exceeded estimates of the minimal importance difference).
Conclusions
The PedsQL is feasible, reliable, and demonstrates good construct and discriminant validity and responsiveness in measuring short-term outcome after minor injury care in the pediatric emergency department. Assessing short-term outcome from the patient perspective with HRQOL measures may greatly enhance our ability to evaluate the effectiveness of emergency department care.
doi:10.1001/archpediatrics.2011.694
PMCID: PMC3714102  PMID: 22213754
12.  Validation of the Korean version of the pediatric quality of life inventory™ 4.0 (PedsQL™) generic core scales in school children and adolescents using the rasch model 
Background
The Pediatric Quality of Life Inventory™ (PedsQL™) is a child self-report and parent proxy-report instrument designed to assess health-related quality of life (HRQOL) in healthy and ill children and adolescents. It has been translated into over 70 international languages and proposed as a valid and reliable pediatric HRQOL measure. This study aimed to assess the psychometric properties of the Korean translation of the PedsQL™ 4.0 Generic Core Scales.
Methods
Following the guidelines for linguistic validation, the original US English scales were translated into Korean and cognitive interviews were administered. The field testing responses of 1425 school children and adolescents and 1431 parents to the Korean version of PedsQL™ 4.0 Generic Core Scales were analyzed utilizing confirmatory factor analysis and the Rasch model.
Results
Consistent with studies using the US English instrument and other translation studies, score distributions were skewed toward higher HRQOL in a predominantly healthy population. Confirmatory factor analysis supported a four-factor and a second order-factor model. The analysis using the Rasch model showed that person reliabilities are low, item reliabilities are high, and the majority of items fit the model's expectation. The Rasch rating scale diagnostics showed that PedsQL™ 4.0 Generic Core Scales in general have the optimal number of response categories, but category 4 (almost always a problem) is somewhat problematic for the healthy school sample. The agreements between child self-report and parent proxy-report were moderate.
Conclusion
The results demonstrate the feasibility, validity, item reliability, item fit, and agreement between child self-report and parent proxy-report of the Korean version of PedsQL™ 4.0 Generic Core Scales for school population health research in Korea. However, the utilization of the Korean version of the PedsQL™ 4.0 Generic Core Scales for healthy school populations needs to consider low person reliability, ceiling effects and cultural differences, and further validation studies on Korean clinical samples are required.
doi:10.1186/1477-7525-6-41
PMCID: PMC2459148  PMID: 18518951
13.  An observational study of patient versus parental perceptions of health-related quality of life in children and adolescents with a chronic pain condition: who should the clinician believe? 
Background
Previous pediatric studies have observed a cross-informant variance in patient self-reported health-related quality of life (HRQoL) versus parent proxy-reported HRQoL. This study assessed in older children and adolescents with a variety of chronic pain conditions: 1) the consistency and agreement between pediatric patients’ self-report and their parents’ proxy-report of their child’s HRQoL; 2) whether this patient-parent agreement is dependent on additional demographic and clinical factors; and 3) the relationship between pediatric patient HRQoL and parental reported HRQoL.
Methods
The 99 enrolled patients (mean age 13.2 years, 71% female, 81% Caucasian) and an accompanying parent completed the PedsQLTM 4.0 and 36-Item Short-Form Health Survey Version 2 (SF-36v2) at the time of their initial appointment in a pediatric chronic pain medicine clinic. Patients’ and parents’ total, physical, and psychosocial HRQoL scores were analyzed via an intra-class correlation coefficient, Spearman’s correlation coefficient, Wilcoxon signed rank test, and Bland-Altman plot. A multivariable linear regression model was used to evaluate the association between clinical and demographic variables and the difference in patient and proxy scores for the Total Scale Score on the PedsQL™.
Results
With the exception of the psychosocial health domain, there were no statistically significant differences between pediatric patients’ self-report and their parents’ proxy-report of their child’s HRQoL. However, clinically significant patient-parent variation in pediatric HRQoL was observed. Differences in patient-parent proxy PedsQL™ Total Scale Score Scores were not significantly associated with patient age, gender, race, intensity and duration of patient’s pain, household income, parental marital status, and the parent’s own HRQoL on the SF-36v2. No significant relationship existed among patients’ self-reported HRQoL (PedsQL™), parental proxy-reports of the child’s HRQoL, and parents’ own self-reported HRQoL on the SF-36v2.
Conclusions
We observed clinically significant variation between pediatric chronic pain patients’ self-reports and their parents’ proxy-reports of their child’s HRQoL. While whenever possible the pediatric chronic pain patient’s own perspective should be directly solicited, equal attention and merit should be given to the parent’s proxy-report of HRQoL. To do otherwise will obviate the opportunity to use any discordance as the basis for a therapeutic discussion about the contributing dynamic with in parent-child dyad.
doi:10.1186/1477-7525-10-85
PMCID: PMC3478968  PMID: 22824550
Health-related quality of life; Chronic pain; Pediatric; Children; Adolescents; Proxy-report; Child-parent agreement
14.  Assessing health-related quality-of-life changes in informal caregivers: an evaluation in parents of children with major congenital anomalies 
Quality of Life Research  2011;21(5):849-861.
Purpose
Relatively few attempts to measure the effects on the health-related quality of life (HRQoL) of informal caregivers within the context of economic evaluations have been reported. This paper is an exploratory attempt to find suitable methods to assess caregivers’ HRQoL, using a population of parents of children with major congenital anomalies.
Methods
A total of 306 parents of children born with either congenital anorectal malformations (ARM) or congenital diaphragmatic hernia were surveyed. They rated their current HRQoL on the EQ-VAS. After that, they rated their HRQoL again on the assumption that someone would take over their caregiving activities completely and free of charge. Finally, the parents classified their HRQoL on the EQ-5D. The caregivers’ scores on the EQ-VAS and the EQ-5D were compared with scores elicited in the general population.
Results
Most parents indicated that their HRQoL would not change if someone else took on their caregiving activities. Some methodological issues may have influenced this outcome, such as difficulties in self-assessing HRQoL changes due to caregiving, process utility, protest answers, and difficulties in understanding the hypothetical question. The HRQoL of the parents was relatively low compared with population statistics, especially in the parents of children with ARM and in mothers. This can be illustrated by the difference between the mean EQ-5D score of the mothers aged 25–34 years of the children with ARM and that of the general population (0.83 vs. 0.93; P = 0.002).
Conclusions
Significant HRQoL differences exist between parents caring for children with congenital anomalies and the general population. It would be useful to further improve our understanding of the HRQoL impact of informal caregiving, separating ‘caregiving effects’ from ‘family effects’, and distinguishing parent–child relationships from other caregiving situations. This study underlines the importance of considering caregivers, also in the context of economic evaluations. It indicates that general HRQoL measures, as used in patients, may be able to detect HRQoL effects in caregivers, which facilitates the incorporation in common economic evaluations of HRQoL effects in carers. Analysts and policy makers should be aware that if HRQoL improvement is an important aim, they should register HRQoL changes not only in patients but also in their caregivers.
doi:10.1007/s11136-011-9991-7
PMCID: PMC3348487  PMID: 21858419
Economic evaluation; Valuation of informal care; Methodology; Quality of life; Neonatal surgery
15.  Validation of the Pediatric Cardiac Quality of Life Inventory 
Pediatrics  2010;126(3):498-508.
OBJECTIVE
The purpose of this multicenter study was to confirm the validity and reliability of the Pediatric Cardiac Quality of Life Inventory (PCQLI).
METHODS
Seven centers recruited pediatric patients (8–18 years of age) with heart disease (HD) and their parents to complete the PCQLI and generic health-related quality of life (Pediatric Quality of Life Inventory [PedsQL]) and non–quality of life (Self-Perception Profile for Children [SPPC]/Self-Perception Profile for Adolescents [SPPA] and Youth Self-Report [YSR]/Child Behavior Checklist [CBCL]) tools. PCQLI construct validity was assessed through correlations of PCQLI scores between patients and parents and with severity of congenital HD, medical care utilization, and PedsQL, SPPC/SPPA, and YSR/CBCL scores. PCQLI test-retest reliability was evaluated.
RESULTS
The study enrolled 1605 patient-parent pairs. Construct validity was substantiated by the association of lower PCQLI scores with Fontan palliation and increased numbers of cardiac operations, hospital admissions, and physician visits (P < .001); moderate to good correlations between patient and parent PCQLI scores (r = 0.41–0.61; P <.001); and fair to good correlations between PCQLI total scores and PedsQL total (r = 0.70–0.76), SPPC/SPPA global self-worth (r = 0.43–0.46), YSR/CBCL total competency (r = 0.28–0.37), and syndrome and Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition-oriented scale (r = −0.58 to −0.30; P < .001) scores. Test-retest reliability correlations were excellent (r = 0.78–0.90; P < .001).
CONCLUSIONS
PCQLI scores are valid and reliable for children and adolescents with congenital and acquired HD and may be useful for future research and clinical management. Pediatrics 2010;126:498–508
doi:10.1542/peds.2009-2973
PMCID: PMC3418527  PMID: 20805147
congenital heart disease; acquired heart disease; health-related quality of life; reliability; validity
16.  Health-related quality of life for pediatric emergency department febrile illnesses: an Evaluation of the Pediatric Quality of Life Inventory™ 4.0 generic core scales 
Objective
We sought to assess the validity and short-term responsiveness of the Pediatric Quality of Life Inventory™ 4.0 Generic Core Scales (PedsQL™) for febrile illnesses evaluated in the pediatric emergency department (ED).
Design
Prospective cohort study of children 2–18 years discharged after ED evaluation for fever (≥ 38°C). Self-administered, parent-report of health-related quality of life (HRQOL) was assessed using the PedsQL™ Acute Version, a validated HRQOL instrument. HRQOL was measured on ED presentation and at 7–10 day follow-up. At follow-up, duration of fever, child functional impairment, missed daycare/school, and disrupted family unit functioning, were assessed.
Results
Of 160 subjects enrolled, 97 (61%) completed the study; mean follow-up was 8.7 days. Mean total HRQOL score on ED presentation was 76.4; mean follow-up score was 86.3. Compared to subjects that returned to baseline, statistically significant differences in HRQOL were noted for those with prolonged fever, child functional impairment, and relapse. Significant correlation was observed between HRQOL at follow-up and days of daycare/school missed (r = -0.35, p = .003) and days of family disruption (r = -0.43, p < .001). Mean change in HRQOL within subjects, from ED visit to follow-up, was +9.8 (95% CI: 5.6–14.6). Effect size was 0.53, indicating moderate responsiveness.
Conclusion
The PedsQL™ appears to be a valid and responsive indicator of HRQOL for short-term febrile illnesses evaluated in the ED.
doi:10.1186/1477-7525-7-5
PMCID: PMC2645372  PMID: 19178744
17.  Health-Related Quality of Life in Children with Sickle Cell Disease: A Report from the Comprehensive Sickle Cell Centers Clinical Trial Consortium 
Pediatric blood & cancer  2010;55(3):485-494.
Background
Pediatric health-related quality of life (HRQOL) questionnaires have been validated in children with sickle cell disease (SCD), but small sample sizes in these studies have limited clinical comparisons. We used the baseline clinical data from the Collaborative Data (C-Data) Project of the Comprehensive Sickle Cell Centers (CSCC) Clinical Trial Consortium to perform a detailed, descriptive study of HRQOL using the PedsQL™ version 4.0 generic core and fatigue scales.
Methods
Retrospective clinical data were obtained via medical record abstraction. Staff-administered health history, psychosocial, and health behavior interviews were completed by a parent or guardian. PedsQL™ forms were completed separately by the child and a parent/guardian.
Results
The study enrolled 1772 subjects (53% boys) with a mean age of 9.6 years (SD 4.7). SS or Sβ0 thalassemia occurred in 68% and 32% had SC or Sβ+ thalassemia. The occurrences of pain, priapism, avascular necrosis of hips/shoulders (AVN), or asthma were the most common complications/conditions reported. Multiple regression models controlling for hemoglobinopathies, gender, and age suggested that parent reports of physical functioning and sleep/rest fatigue declined in response to pain or AVN, while school functioning scales declined in response to pain or asthma. Sickle pain, and to a lesser extent asthma, negatively influenced child reports on almost all functioning and fatigue scales.
Conclusions
While longitudinal studies will be necessary to determine sensitivity to change, the current study suggests the potential utility of several PedsQL™ HRQOL scales as patient-reported outcome measures for observational or interventional treatment studies of children and adolescents with SCD.
doi:10.1002/pbc.22497
PMCID: PMC2911637  PMID: 20658620
HRQOL; Sickle Cell Disease; Peds QL
18.  Quality of Life Measurement for Children with Life-Threatening Conditions: Limitations and a New Framework 
Child indicators research  2011;4(1):145-160.
About 500,000 children are coping with life-threatening conditions (LTC) in the United States every year. Different service programs such as an integrated pediatric palliative care program may benefit health-related quality of life (HRQOL) which is a great concern of this children population and their families. However, evidence is limited about the appropriate HRQOL instruments for use. This study aims to validate psychometric properties of a generic HRQOL instrument, the Pediatric Quality of Life (PedsQL) 4.0, for children with LTC. The parent proxy-report was used. We conducted a telephone interview to collect data of 257 parents whose children had LTC and were enrolled in Medicaid. We used standard psychometric methods to validate the PedsQL: scale reliability, item-domain convergent/discriminant validity, and known-groups validity. We also conducted Rasch analysis to assess construct validity. Results suggest that the PedsQL did not demonstrate valid psychometric properties for measuring HRQOL in this population. Rasch analysis suggests that the contents of the items in all domains did not appropriately cover the latent HRQOL of children with LTC. We document several methodological challenges in using a generic instrument to measuring HRQOL and propose a new framework to improve HRQOL measures for children with LTC. The strategies include revising the content of existing items, designing new items, adding important themes (e.g., financial challenge), and applying computerized adaptive test to better select appropriate items for individual children with LTC.
doi:10.1007/s12187-010-9079-x
PMCID: PMC3133777  PMID: 21760876
Quality of life; Life-threatening conditions; Psychometrics
19.  Health-Related Quality of Life, Activities of Daily Living and Parenting Stress in Children with Brain Tumors 
Psychiatry Investigation  2011;8(3):250-255.
Objective
To compare health-related quality of life (HRQOL), activities of daily living (ADL), and parenting stress between children with brain tumors and those of normal control (NC).
Methods
Participants were 31 brain tumor patients who had received chemotherapy, radiotherapy, or peripheral blood stem cell transplantation after surgical resection and 125 NC subjects. We administered the Pediatric Quality of Life Inventory, version 4.0 (PedsQL), to assess HRQOL; the Korean version of the Parenting Stress Index-Short Form (K-PSI-SF), to assess parenting stress; and examined ADL.
Results
The mean self-report PedsQL scores for physical health, emotional functioning, social functioning, school functioning, and total scores in the patients were significantly lower than those of the NC group. The mean parent proxy-report PedsQL scores for all scales except emotional functioning in the patient group were significantly lower than those of the NC group. The ADL impairment for the patients was significantly more than that of the NC group. The K-PSI-SF mean scores for stress related to having a difficult child and for stress related to parent-child interaction in the patient group tended to be higher than those of the NC group (p=0.09).
Conclusion
The children with brain tumors had lower HRQOL and difficulties in performing ADL. The parents of children with brain tumors tended to experience stress related to having a difficult child and to parent-child interaction. We suggest that long-term monitors for the child's HRQOL and ADL, and parenting stress in children with brain tumors are needed.
doi:10.4306/pi.2011.8.3.250
PMCID: PMC3182391  PMID: 21994513
ADL; Childhood brain tumor; HRQOL; Parenting stress
20.  Development and Initial Validation of an Obesity-specific Quality-of-life Measure for Children: Sizing Me Up 
Obesity (Silver Spring, Md.)  2009;17(6):1171-1177.
The present study describes the development and initial validation of a new obesity-specific, self-report measure of health-related quality of life (HRQOL) for children aged 5–13 years. Participants included 141 obese children (mean age = 9.2 years, 67% female, 55% black, mean zBMI = 2.52) and their primary caregivers. Children completed Sizing Me Up (obesity-specific HRQOL) and the PedsQL (generic HRQOL). Item content for Sizing Me Up was based on the published child obesity and HRQOL literatures and expert opinion. Items use phrasing to orient children to respond to questions in context of his/her size (e.g., “were teased by other kids because of your size”). Caregivers completed Sizing Them Up, a parallel parent-proxy, obesity-specific HRQOL measure. Initial psychometric evaluation of Sizing Me Up was completed by conducting a factor analysis and determining internal consistency, test–retest reliability, and convergent and construct validity. Sizing Me Up is a 22-item measure with five scales (i.e., Emotional Functioning, Physical Functioning, Social Avoidance, Positive Social Attributes, and Teasing/Marginalization) that account for 57% of the variance and a total HRQOL score. Internal consistency coefficients range from 0.68 to 0.85. Test–retest reliabilities range from 0.53 to 0.78. Good convergent validity was demonstrated with the PedsQL (rs = 0.35–0.65) and the parent-proxy Sizing Them Up (rs = 0.22–0.44). Sizing Me Up represents the first obesity-specific HRQOL measure developed specifically for younger school-aged children (aged 5–13 years) with preliminary evidence of strong psychometric properties that likely has both clinical and research utility in a variety of settings.
doi:10.1038/oby.2009.47
PMCID: PMC3483635  PMID: 19265795
21.  Comparison of health related quality of life of primary school deaf children with and without motor impairment 
Objective
To compare the health-related quality of life (HRQOL) of primary school-age deaf children with or without motor impairment to that of typically developing peers.
Methods
This study was a prospective, cross sectional study. With age-matched controls, 100 children were analyzed in each of the following three categories: normal hearing, hearing impaired without motor impairment, and hearing impairment with motor impairment. The Paediatric Quality of Life Inventory (PedsQL™) version 4.0 was used to assess the HRQOL.
Results
Hearing impairment along with motor impairment in children is associated with significantly increased proportions of suboptimal levels of function and significantly lower HRQOL. Children with hearing impairment and no motor impairment had significantly lower scores in the emotional health and school function domains of the PedsQL than children with normal hearing, but there was no significant difference in the physical and social health domain scores. Children with hearing impairment and motor impairment showed significantly lower scores in all domains of the PedsQL compared to children with normal hearing. Scores in all four domains of the PedsQL differed between children with hearing impairment and no motor impairment and children with hearing impairment and motor impairment.
Conclusion
These findings indicate that children with hearing impairment, both with and without motor impairment, have a diminished health-related quality of life.
doi:10.1186/1824-7288-36-75
PMCID: PMC2997090  PMID: 21070679
22.  Relationship of Sleep Quality and Health-Related Quality of Life in Adolescents According to Self- and Proxy Ratings: A Questionnaire Survey 
Introduction: Sleep disturbances are common in adolescents and adversely affect performance, social contact, and susceptibility to stress. We investigated the hypothesis of a relationship between sleep and health-related quality of life (HRQoL), and applied self- and proxy ratings. Materials and Methods: The sample comprised 92 adolescents aged 11–17 years. All participants and their parents completed a HRQoL measure and the Sleep Disturbance Scale for Children (SDSC). Children with SDSC T-scores above the normal range (above 60) were classified as poor sleepers. Results: According to self- and proxy ratings, good sleepers reported significantly higher HRQoL than poor sleepers. Sleep disturbances were significantly higher and HRQoL significantly lower in self- as compared to parental ratings. Parent-child agreement was higher for subscales measuring observable aspects. Girls experienced significantly stronger sleep disturbances and lower self-rated HRQoL than boys. Discussion: Our findings support the positive relationship of sleep and HRQoL. Furthermore, parents significantly underestimate sleep disturbances and overestimate HRQoL in their children.
doi:10.3389/fpsyt.2012.00076
PMCID: PMC3432511  PMID: 22969731
quality of life; sleep; adolescence; parent-child agreement; sleep disorders
23.  The PedsQL™ Family Impact Module: Preliminary reliability and validity 
Background
The PedsQL™ Measurement Model was designed to measure health-related quality of life (HRQOL) in children and adolescents. The PedsQL™ 4.0 Generic Core Scales were developed to be integrated with the PedsQL™ Disease-Specific Modules. The newly developed PedsQL™ Family Impact Module was designed to measure the impact of pediatric chronic health conditions on parents and the family. The PedsQL™ Family Impact Module measures parent self-reported physical, emotional, social, and cognitive functioning, communication, and worry. The Module also measures parent-reported family daily activities and family relationships.
Methods
The 36-item PedsQL™ Family Impact Module was administered to 23 families of medically fragile children with complex chronic health conditions who either resided in a long-term care convalescent hospital or resided at home with their families.
Results
Internal consistency reliability was demonstrated for the PedsQL™ Family Impact Module Total Scale Score (α = 0.97), Parent HRQOL Summary Score (α = 0.96), Family Functioning Summary Score (α = 0.90), and Module Scales (average α = 0.90, range = 0.82 – 0.97). The PedsQL™ Family Impact Module distinguished between families with children in a long-term care facility and families whose children resided at home.
Conclusions
The results demonstrate the preliminary reliability and validity of the PedsQL™ Family Impact Module in families with children with complex chronic health conditions. The PedsQL™ Family Impact Module will be further field tested to determine the measurement properties of this new instrument with other pediatric chronic health conditions.
doi:10.1186/1477-7525-2-55
PMCID: PMC521692  PMID: 15450120
health-related quality of life; family; pediatrics; children; PedsQL™
24.  The Pediatric Quality of Life Inventory™ (PedsQL™) family impact module: reliability and validity of the Brazilian version 
Background
Pediatric health-related quality of life (HRQOL) has emerged as an important health outcome in clinical trials and healthcare research, for which HRQOL assessment instruments have played an important role. However, these instruments are not available in all countries or all languages. The Pediatric Quality of Life Inventory™ (PedsQL™) Family Impact Module is a multidimensional instrument developed to assess the impact of chronic medical conditions on the HRQOL of parents and family functioning. The objective of the present study was to evaluate the psychometric properties of the PedsQL™ Family Impact Module cross-culturally adapted for use in Brazil.
Methods
The PedsQL™ Family Impact Module was administered to 95 parents/guardians of children with cancer in active therapy from 2 to 18 years of age of both genders. Subjects were recruited by means of convenience samples from the Pediatric Hematology/Oncology Centers at two public hospitals. The 'in-patient' sample was defined as individuals who were hospitalized for the administration of chemotherapy. The 'out-patient' sample was defined as individuals who were receiving chemotherapy and were not hospitalized.
Results
Test-retest reliability exhibited correlation values ranging from 0.81 to 0.96 for all subscales. Internal consistency reliability was demonstrated for the PedsQL™ Family Impact Module: Total Scale Score (α = 0.89), Parent Health-Related Quality of Life Summary Score (α = 0.83) and Family Summary Score (α = 0.73). The Total Impact Score for the in-patient and out-patient samples was 67.60 and 56.43, respectively (p < 0.01). The construct validity demonstrated that the PedsQL™ Family Impact Module proved capable of distinguishing between families whose children/adolescents were hospitalized and families of children/adolescents who are being taken care of at home.
Conclusion
The Brazilian version of the PedsQL™ Family Impact Module was considered reliable and valid for assessing the impact of a chronic pediatric health condition on the HRQOL of parents and family functioning. The instrument should be field tested on other chronic pediatric illnesses.
doi:10.1186/1477-7525-6-35
PMCID: PMC2412859  PMID: 18492262
25.  Body mass index and health related quality of life in elementary school children: a pilot study 
Background
We investigated the relationship between Body Mass Index (BMI) and health-related quality of life (HRQOL) indicated by baseline health status in elementary school children.
Methods
Data were obtained via parents whose children enrolled in an elementary school, kindergarten to fourth grade, in southern Mississippi in spring 2004. Parents completed the SF-10 for Children™, a brief 10-item questionnaire designed to measure children's HRQOL on a voluntary basis.
Results
A total of 279 parents completed the questionnaires for their children. On average, physical and psychosocial summary scores, major indicators for HRQOL, were significantly higher among the elementary school children in our study relative to those from U.S. children overall (p < 0.0001 and p = 0.0007, respectively). Males tended to have better physical functioning than their female classmates, whereas females had better psychosocial health. Overall, except for third graders, the physical summary scores increased as grade level increased. The means for psychosocial score fluctuated without a clear pattern over the five grade levels. High level of BMI was significantly associated with children's physical summary scores below 50, a norm used for U.S. children (p = 0.003). Gender and grade were not significant predictors of children's physical and psychosocial scores.
Discussion
This study can be used as baseline information to track changes over time, in BMI and health status among the elementary school children. In addition, this study can be used to investigate relationships between BMI, health status, intellectual ability, and performance in school.
Conclusion
The findings suggest that programs designed to encourage children to lose weight in a healthy manner, thus reducing their BMI, could improve the physical and psychosocial health, and subsequently increase HRQOL.
doi:10.1186/1477-7525-6-77
PMCID: PMC2576174  PMID: 18845000

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