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1.  Feasibility, reliability, and validity of adolescent health status measurement by the Child Health Questionnaire Child Form (CHQ-CF): internet administration compared with the standard paper version 
Quality of Life Research  2007;16(4):675-685.
In this study we evaluated indicators of the feasibility, reliability, and validity of the Child Health Questionnaire-Child Form (CHQ-CF). We compared the results in a subgroup of adolescents who completed the standard paper version of the CHQ-CF with the results in another subgroup of adolescents who completed an internet version, i.e., an online, web-based CHQ-CF questionnaire.
Under supervision at school, 1,071 adolescents were randomized to complete the CHQ-CF and items on chronic conditions by a paper questionnaire or by an internet administered questionnaire.
The participation rate was 87%; age range 13–7 years. The internet administration resulted in fewer missing answers. All but one multi-item scale showed internal consistency reliability (Cronbach’s α > 0.70). All scales clearly discriminated between adolescents with no, a few, or many self-reported chronic conditions. The paper administration resulted in statistically significant, higher scores on 4 of 10 CHQ-CF scales compared with the internet administration (P < 0.05), but Cohen’s effect sizes d were ≤0.21. Mode of administration interacted significantly with age (P < 0.05) on four CHQ-CF scales, but Cohen’s effect sizes for these differences were also ≤0.21.
This study supports the feasibility, internal consistency reliability of the scales, and construct validity of the CHQ-CF administered by either a paper questionnaire or online questionnaire. Given Cohen’s suggested guidelines for the interpretation of effect sizes, i.e., 0.20–.50 indicates a small effect, differences in CHQ-CF scale scores between paper and internet administration can be considered as negligible or small.
PMCID: PMC1832149  PMID: 17286197
Health status measurement; Health-related quality of life; Adolescents; Feasibility; Reliability; Validity; Online questionnaire; Internet questionnaire; Web-based questionnaire; Child Health Questionnaire Child Form 87 items (CHQ-CF87); Reference / norm scores
2.  Validation of Pediatric Functional Assessment of Cancer Therapy Questionnaire (Version 2.0) in Brain Tumor Survivor Aged 13 Years and Older (Parent Form)(PedsFACT-BrS Parent of Adolescent) 
The aim of this study was to evaluate the reliability and validity of the Pediatric Functional Assessment of Cancer Therapy Questionnaire Brain Tumor Survivor (version 2.0) Aged 13 years and older (Parent Form) (pedsFACT-BrS parent of adolescent).
The pedsFACT-BrS parent of adolescent was translated and cross-culturally adapted into Korean, following standard Functional Assessment of Chronic Illness Therapy (FACIT) methodology. The psychometric properties of the pedsFACT-BrS parent of adolescent were evaluated in 170 brain tumor patient's mothers (mean age=43.38 years). Pretesting was performed in 30 mothers, and the results indicated good symptom coverage and overall comprehensibility. The participants also completed the Child Health Questionnaire Parent Form 50 (CHQ-PF-50), Neuroticism in Eysenck Personality Questionnaire, and Karnofsky score.
In validating the pedsFACT-BrS parent of adolescent, we found high internal consistency, with Cronbach's α coefficients ranging from 0.76 to 0.94. The assessment of test-retest reliability using intraclass correlation coefficient revealed satisfactory values with ICCs ranging from 0.84 to 0.93. The pedsFACT-BrS for parent of adolescent also demonstrated good convergent and divergent validities when correlated with the Child Health Questionnaire Parent Form 50 (CHQ-PF-50) and the Neuroticism in Eysenck Personality Questionnaire. The pedsFACT-BrS parent of adolescent showed good clinical validity, and effectively differentiated between clinically distinct patient groups according to the type of treatment, tumor location, shunt, and Karnofsky score of parent proxy report.
We confirmed that this reliable and valid instrument can be used to properly evaluate the quality of life of Korean adolescent brain tumor patients by their parents' proxy report.
PMCID: PMC3085809  PMID: 21556233
Quality of life; Adolescent brain tumor patient; pedsFACT-BrS parent of adolescent; Validity
3.  Reliability and validity of the Norwegian child and parent versions of the DISABKIDS Chronic Generic Module (DCGM-37) and Diabetes-Specific Module (DSM-10) 
International guidelines on type 1 diabetes advocate routine screening of health-related quality of life (HRQOL). DISABKIDS questionnaires are the first instruments developed across cultures and nations to provide age-appropriate measures of HRQOL in children with chronic diseases. DISABKIDS includes a Chronic Generic Module 37 (DCGM-37) and disease-specific modules. The purpose of this study was to examine reliability and validity of the Norwegian versions of the DISABKIDS questionnaires in children and adolescents with type 1 diabetes.
The DCGM-37 and the Diabetes Specific Module-10 (DDM-10) were translated into Norwegian using standard forward-backward translation. Eight to 19 year old children and adolescents with type 1 diabetes scheduled for routine follow-up at three diabetic clinics in Norway and one of their parents were invited to complete the DCGM-37 and the DDM-10. Internal consistency was determined using Cronbach's alpha. Results were compared with those of the Child Health Questionnaire Children Form-87 (CHQ-CF87) and Child Health Questionnaire Parent Form-50 which are established generic questionnaires. DISABKIDS results were related to age, gender, duration of diabetes, mode of insulin delivery and metabolic control. Clinical data were obtained from the Norwegian Childhood Diabetes Registry.
Of 198 eligible child-parent dyads, 103 (52%) completed the questionnaires. Mean age was 13.6 (2.6), range 8-19 yrs, 52% were boys. Cronbach's alpha was > 0.70 for all the DISABKIDS sub-scales except two (physical ability and social inclusion). There were moderate to high correlations (0.65-0.81) between the DISABKIDS scales and mental/emotional sub-scales of CHQ-CF87. Increasing age and higher HbA1c were significantly associated with reduced HRQOL scores. Parents tended to score their child's HRQOL lower than the children/adolescents themselves.
The study shows that the DISABKIDS instruments are applicable to a Norwegian childhood diabetes population. They seem to be a relevant supplement to other clinical indicators in medical practice and research.
PMCID: PMC3296581  PMID: 22300248
Health-related quality of life; Type 1 diabetes; Children; Adolescents; Psychometrics; Reliability; Validity; DISABKIDS
4.  Construct validation of the Health Utilities Index and the Child Health Questionnaire in children undergoing cancer chemotherapy 
British Journal of Cancer  2003;88(8):1185-1190.
The objective of this study was to evaluate the construct validity of two questionnaire-based measures of health-related quality of life (HRQL) in children undergoing cancer chemotherapy: the Health Utilities Index (HUI) and the Child Health Questionnaire (CHQ). Subjects were children hospitalised for chemotherapy. To examine construct validity: (1) a priori expected relations between CHQ concepts and HUI attributes were examined; (2) HUI and CHQ summary scores were compared to visual analogue scale (VAS) scores. Ease of completion was rated using a 5-point categorical scale and completion time was recorded. A total of 36 subjects were included. The maximum score was seen in 15 (47%) of HUI3 assessments. As predicted, CHQ body pain was moderately correlated with HUI3 pain (r=0.51), CHQ physical functioning was moderately correlated with HUI2 mobility (r=0.58) and CHQ mental health was moderately correlated with HUI2 emotion (r=0.53). Only the CHQ psychosocial subscale (and not HUI) was correlated with VAS (r=0.44). The CHQ and the HUI were both easy to use. The HUI questionnaires required less time to complete (mean=3.1, s.d.=1 min) compared with CHQ (mean=13.1, s.d.=3.4 min, P<0.0001). In conclusion, HUI and CHQ demonstrated construct validity in children undergoing cancer chemotherapy. The Health Utilities Index is subject to a ceiling effect whereas CHQ requires more time to complete.
PMCID: PMC2747569  PMID: 12698182
chemotherapy; pediatric; health-related quality of life; Health Utilities Index; Child Health Questionnaire
5.  Health-related quality-of-life measures for long-term follow-up in children after major trauma 
Quality of Life Research  2008;17(5):701-713.
Our objective was to review measures of health-related quality of life (HRQL) for long-term follow up in children after major trauma and to determine the measures that are suitable for a large age range, reliable and valid, and cover a substantial amount of the domains of functioning using the International Classification of Functioning, Disability, and Health (ICF) of the World Health Organization (WHO).
The Medline and EMBASE databases were searched in all years up to October 2007 for generic HRQL measures suitable for children aged 5–18 years old and validated in English or Dutch. Measures were reviewed with respect to the age range for which the measure was suitable and reliability, validity, and content related to the ICF.
The search resulted in 1,235 hits and 21 related articles. Seventy-nine papers met the inclusion criteria, describing in total 14 measures: Child Health and Illness Profile Adolescent and Child Edition (CHIP-AE/CE), Child Health Questionnaire Child and Parent Forms (CHQ-CF87/PF50/PF28), DISABKIDS, Functional Status II (FS II)(R), Health Utilities Index Mark 2 (HUI 2), KIDSCREEN 52/27, KINDL, Pediatric Quality of Life Inventory (PedsQL), TNO Institute of Prevention and Health and the Leiden University Hospital (TNO-AZL), TNO-AZL Children’s Quality Of Life (TACQOL), and Youth Quality of Life Instrument—Research Version (YQOL-R). Measures that were suitable for a large age range were CHQ-PF50/PF28, DISABKIDS, FS II(R), HUI 2, KIDSCREEN, PedsQL, and TACQOL. All measures had moderate to good psychometric properties, except for CHQ-PF50/PF28, KINDL, and TACQOL, which had either low internal consistency or bad test–retest reliability. The measures that covered more than six chapters of the ICF domains were CHIP-AE/CE, CHQ-CF87/PF50, DISABKIDS, KIDSCREEN-52, PedsQL, and TACQOL.
DISABKIDS, KIDSCREEN 52, and PedsQL are suitable for long-term follow-up measurement of HRQL in children after major trauma. They cover a large age range, have good psychometric properties, and cover the ICF substantially.
PMCID: PMC2440951  PMID: 18437531
Health-related quality of life; Children; Major trauma; Long term; International classification of functioning; Disability and health
6.  Validation of the Brazilian version of the pediatric outcomes data collection instrument: a cross-sectional evaluation in children and adolescents with juvenile idiopathic arthritis 
BMC Pediatrics  2013;13:177.
There is a lack of health-related quality of life (HRQOL) questionnaires to evaluate pediatric musculoskeletal diseases in Brazil. The Pediatric Outcome Data Collection Instrument (PODCI) is widely used elsewhere for pediatric patients with musculoskeletal disorders, but it has not been fully validated in Brazil. Validation of the PODCI in the Brazilian Portuguese language is important to improve the assessment of pediatric patients with musculoskeletal diseases and to compare Brazilian study results with results from the international literature. This study aimed to analyze the test–re-test reliability and the convergent validity indicators for the quality of life scores obtained by application of the PODCI to children and adolescents with juvenile idiopathic arthritis (JIA).
The PODCI underwent translation, transcultural adaptation, and field testing. Fifty-seven children and adolescents with JIA were administered the PODCI questionnaire. The Child Health Questionnaire - Parent Form 28 (CHQ PF-28) was used as the gold standard. Pain scales were employed, clinical examinations were performed, and laboratory inflammatory activity tests were conducted.
The three versions of the PODCI exhibited good internal consistency (Cronbach’s alpha coefficient >0.70), good reproducibility (p < 0.05), and good correlation compared with the gold standard (CHQ), as shown by a Spearman coefficient (Rho) >0.40 (p < 0.05).
The PODCI was validated in patients with JIA in Brazil. This questionnaire was found to be valid, precise, and reliable. It can be successfully applied in research conducted by healthcare professionals who work with children and adolescents with musculoskeletal system disorders.
PMCID: PMC4228465  PMID: 24171906
Quality of life; Questionnaires; Musculoskeletal diseases; Children; Adolescents; Validation studies; Brazil
7.  Health-related quality of life of children with physical disabilities: a longitudinal study 
BMC Pediatrics  2014;14:26.
Outcomes of health and rehabilitation services for children and youth with disabilities increasingly include assessments of health-related quality of life (HRQoL). The purpose of this research was to 1) describe overall patterns of HRQoL, 2) examine changes in parent’s perceptions of child’s HRQoL across 18 months and 3) explore factors that predict these changes.
Participants in this study included 427 parents of children (229 boys and 198 girls) with a physically-based disability between the ages of 6 to 14 years. The Child Health Questionnaire (CHQ) was administered three times, at nine month intervals. Comparisons to the CHQ normative data were analyzed at Time 1 using t-tests, and change over time was examined using linear mixed-effects models. Possible predictors were modeled: 1) child’s factors measured by the Activities Scale for Kids, Strengths and Difficulties Questionnaire, and general health measured by SF-36, 2) family characteristics measured by the Impact on Family Scale and 3) environmental barriers measured by the Craig Hospital Inventory of Environmental Factors.
CHQ scores of the study’s participants demonstrated significantly lower summary scores from the normative sample for both CHQ Physical and Psychosocial summary scores. On average, children did not change significantly over time for physical summary scores. There was an average increase in psychosocial health that was statistically significant, but small. However, there was evidence of heterogeneity among children. Environmental barriers, behavioral difficulties, family functioning/impact, general health and child physical functioning had negative and significant associations with physical QoL at baseline. Change in physical QoL scores over time was dependent on children’s behavioral difficulties, family functioning and environmental barriers. Environmental barriers, behavioral difficulties, family functioning/impact and general health had significant associations with psychosocial scores at baseline, but none served as predictors of change over time.
Children with physical disabilities differ from the normative group on parent ratings of their physical and psychosocial health. While there was little average change in CHQ scores over 18 months, there is evidence of heterogeneity among children. Factors such as environmental barriers, family functioning/impact, child physical functioning and behavioral difficulties and general health significantly influence QoL scores as measured by the CHQ.
PMCID: PMC3911963  PMID: 24476085
Disability; Health-related quality of life; Longitudinal study; Environmental barriers
8.  Reliability and validity of the Infant and Toddler Quality of Life Questionnaire (ITQOL) in a general population and respiratory disease sample 
Quality of Life Research  2006;16(3):445-460.
To evaluate feasibility, internal consistency, test–retest reliability, and concurrent and discriminative validity of the Infant and Toddler Quality of Life Questionnaire (ITQOL) for parents of pre-school children with 12 scales (103-items) covering physical and psychosocial domains and impact of child health on parents, in comparison with the TNO-AZL Pre-school Children Quality of Life Questionnaire (TAPQOL).
Parents of children from a random general population sample (2 months–4 years old; n = 500) and of an outpatient clinic sample of children with respiratory disease (5 months–5 1/2 years old; n = 217) were mailed ITQOL and TAPQOL questionnaires; a retest was sent after two weeks.
Feasibility: The response was ≥80% with few missing and non-unique ITQOL-answers (<2%) in both study populations. Some ITQOL-scales (3–4 scales) showed a ceiling effect (>25% at maximum score). Internal consistency: All Cronbach’s α >0.70. Test–retest Intraclass Correlation Coefficients (ICCs) were moderate or adequate (≥0.50; p lt; 0.01) for 10 ITQOL-scales. Validity: ITQOL-scales, with a few exceptions, correlated better with predefined parallel TAPQOL scales than with non-parallel scales. Five to eight ITQOL-scales discriminated clearly between children with few and with many parent-reported chronic conditions, between children with and without doctor-diagnosed respiratory disease and with a low and a high parent-reported medical consumption (p <0.05).
This study supported the evidence that the ITQOL is a feasible instrument with adequate psychometric properties. The study provided reference ITQOL scores for gender/age subgroups. We recommend repeated evaluations of the ITQOL in varied populations, especially among very young children, including repeated assessments of test–retest characteristics and evaluations of responsiveness to change. We recommend developing and evaluating a shortened ITQOL version.
PMCID: PMC2792359  PMID: 17111231
Asthma; General population; Health-related quality of life; Infant and Toddler Quality of Life Questionnaire (ITQOL); Pre-school children; Reference/norm scores; Reliability; TNO-AZL Pre-school Children Quality of Life Questionnaire (TAPQOL); Validity
9.  Relative responsiveness of condition specific and generic health status measures in juvenile idiopathic arthritis 
Annals of the Rheumatic Diseases  2005;64(2):257-261.
Objectives: To compare the relative responsiveness of condition specific measures with that of a generic health status instrument for outcome assessment of intra-articular corticosteroid (IAC) injection in patients with juvenile idiopathic arthritis (JIA).
Methods: We examined 44 consecutive patients with oligoarticular JIA before an IAC injection and after 6 months. Condition specific measures included physician's and parent's global assessments, the Childhood Health Assessment Questionnaire (CHAQ), the articular indices, and laboratory indicators of systemic inflammation. The generic health status instrument was the Child Health Questionnaire (CHQ), which was divided into two parts: the physical score (PhS) and the psychosocial score (PsS). Responsiveness statistics were the standardised response mean, the effect size, and Guyatt's method. The discriminative ability of the clinical measures in distinguishing improved from non-improved patients was evaluated with the correlation and the receiver operating characteristic methods, using the physician's and the parent's judgements of the treatment outcome as external criteria.
Results: All responsiveness statistics and discriminative ability assessments consistently ranked the physician's global assessment of the disease activity as the most responsive measure. The CHQ-PhS revealed superior ability in detecting baseline versus 6 month change compared with the CHAQ and the CHQ-PsS; both summary scales of the CHQ revealed better discriminative ability than the CHAQ.
Conclusions: The physician's global assessment of the disease activity proved the most responsive outcome measure in our patients with JIA. The relative evaluative properties of the generic health status instrument and the CHAQ should be further investigated.
PMCID: PMC1755364  PMID: 15647433
10.  Differences in child versus parent reports of the child's health-related quality of life in children with epilepsy and healthy siblings 
Self-versus proxy- perspectives may produce different results that are important for clinical decision-making and for assessing outcomes in research studies. We examined differences in child versus parent-report of the child's health-related quality of life (HRQOL) in a large prospective, community-based study of newly diagnosed childhood epilepsy that included children with epilepsy (case) and sibling controls.
HRQOL was assessed 8–9 years after initial diagnosis of epilepsy in a subset of 143 case-control matched pairs using the Child Health Questionnaire (CHQ), a generic HRQOL measure with child (CHQ-CF87) and parent (CHQ-PF50) versions.
There were no significant differences between self-reported case and sibling control HRQOL scores on 9 of 11 scales or 2 global-items. However, parent ratings were significantly better (higher HRQOL) for sibling controls compared to epilepsy cases on 10 of 12 scales, global behavior and general health items, and the physical and psychosocial summary scores (p≤0.05). Parent-child agreement was low for cases and controls (kappa 0.27–0.33) for three single-item questions with the same wording on parent and child versions. Parent ratings of the case’s HRQOL were often significantly associated with 5-year remission status and current anti-epileptic drug use, but the case’s self-reported HRQOL scores were not. In contrast, current pharmacoresistance was often associated with the child and parent ratings of the child’s HRQOL.
Children with epilepsy report HRQOL that is comparable to that of sibling controls while parents rate children with epilepsy as having lower HRQOL than sibling controls. Measuring outcomes in studies of this population should incorporate both perspectives.
PMCID: PMC3065295  PMID: 20561342
child and adolescent health; epilepsy; outcomes research; health-related quality of life (HRQOL); patient-reported outcomes; proxy; Child Health Questionnaire (CHQ)
11.  Health-related quality of life and emotional and behavioral difficulties after extreme preterm birth: developmental trajectories 
PeerJ  2015;3:e738.
Background. Knowledge of long-term health related outcomes in contemporary populations born extremely preterm (EP) is scarce. We aimed to explore developmental trajectories of health-related quality of life (HRQoL) and behavior from mid-childhood to early adulthood in extremely preterm and term-born individuals.
Methods. Subjects born at gestational age ≤28 weeks or with birth weight ≤1,000 g within a region of Norway in 1991–92 and matched term-born control subjects were assessed at 10 and 18 years. HRQoL was measured with the Child Health Questionnaire (CHQ) and behavior with the Child Behavior Checklist (CBCL), using parent assessment at both ages and self-assessment at 18 years.
Results. All eligible EP (n = 35) and control children participated at 10 years, and 31 (89%) and 29 (83%) at 18 years. At 10 years, the EP born boys were given significantly poorer scores by their parents than term-born controls on most CHQ and CBCL scales, but the differences were minor at 18 years; i.e., significant improvements had occurred in several CHQ (self-esteem, general health and parental impact-time) and CBCL (total problem, internalizing and anxious/depressed) scales. For the girls, the differences were smaller at 10 years and remained unchanged by 18 years. Emotional/behavioral difficulties at 10 years similarly predicted poorer improvement on CHQ-scales for both EP and term-born subjects at 18 years. Self-assessment of HRQoL and behavior at 18 years was similar in the EP and term-born groups on most scales.
Conclusions. HRQoL and behavior improved towards adulthood for EP born boys, while the girls remained relatively similar, and early emotional and behavioral difficulties predicted poorer development in HRQoL through adolescence. These data indicate that gender and a longitudinal perspective should be considered when addressing health and wellbeing after extremely preterm birth.
PMCID: PMC4304859  PMID: 25653912
Adolescent; Development; Preterm infant; Health-related quality of life; Behavior
12.  Psychometric Properties of the Autoquestionnaire Qualité De Vie Enfant Imagé (AUQEI) Applied to Children with Cerebral Palsy 
PLoS ONE  2015;10(2):e0115643.
Quality of life (QL) assessments of children with incapacitating diseases, such as cerebral palsy (CP), have often been conducted with the help of the representatives of a child, making QL assessment more subjective. TheAutoquestionnaireQualité de Vie Enfant Imagé (AUQEI) is a QL assessment designed for children to self-report—it uses images to facilitate the reporting process.
evaluate the psychometric properties of AUQEI when responses are given by children with CP.
Children aged 4 to 12 years (45 with CP and 45 healthy children) gave responses to the questionnaire. The data quality, reliability and validity were assessed. The data loss rate ranged from 8.8% to 46.7%, and was highest for the “autonomy” factor. No floor or ceiling effect was detected. The success rate for reliability of the internal consistency of the items was less than 80% for the “autonomy” factor. Cronbach’s alpha coefficient was 0.71 for the instrument and less than 0.5 for the factors. All the factors had a success rate of greater than 80% for the discriminating validity of the items. The factors did not have correlations between each other, thus indicating adequate discriminating validity. Convergent validity was tested and a significant correlation was demonstrated only between the AUQEI “functioning” factor and the Child Health Questionnaire—50-Item (CHQ-PF50) physical summary score (r = 0.31, p = 0.042). The AUQEI scores did not have correlations with the gross motor function scores (p>0.05) as expected for divergent validity. Regarding construct validity, the total AUQEI score obtained by the CP group was lower (median: 47.3) than that of the healthy group (median: 51.0) (p<0.01).
The AUQEI was shown to be a reliable and valid instrument for assessing children with CP when the total score was used. Convergent validity should continue to be tested in future studies.
PMCID: PMC4324774  PMID: 25671523
13.  Chronic health problems and health-related quality of life in Chinese children and adolescents: a population-based study in Hong Kong 
BMJ Open  2013;3(1):e001183.
We examined the association of different chronic physical and mental conditions, individually or comorbidly on health-related quality of life (QoL) in Chinese children aged ≤14 years in Hong Kong.
Population-based cross-sectional survey.
Approximately 7500 Chinese children aged <14 years in Hong Kong.
Primary and secondary outcome measures
Various health concepts of validated Chinese version of Child Health Questionnaire (CHQ), a health-related QoL questionnaire in children.
There was significant association of physical and mental health conditions, either individually or comorbidly, on the various concepts of CHQ. Children with mental health problems were apparently more affected than those with physical health problems. Chronic renal disease and congenital malformation were the physical health conditions associated with the lowest scores in CHQ concepts in children aged 5–10 years and aged 10–14 years, respectively. Behavioural problem was the mental health condition associated with the lowest score in CHQ concepts in both age groups.
Our study shows important information concerning the prevalence of different health conditions and its association, either individually or comorbidly on the QoL in a representative sample of Chinese children in HK.
PMCID: PMC3549227  PMID: 23293240
14.  The value of choice: development of a new measurement tool 
Current policy advocates individual choice across a number of domains, including healthcare provision.
To develop a new tool for measuring people's beliefs about the value of choice in the context of healthcare provision.
Design of study
Cross-sectional survey.
Four general practices in South East England.
Nine items relating to health and general domains, derived from in-depth interviews with 22 participants, were collated into a questionnaire. This formed the measurement tool called the Choice Questionnaire (ChQ), which was completed by 823 consecutive patients (response rate = 81.2%).
Principal components analysis resulted in two factors: having choices (for example, ‘I like to know all the possible ways in which I could be treated’) and making choices (for example, ‘I am happy for the doctor to make decisions for me’). These two constructs showed good internal consistency. One item was deleted, resulting in the 8-item ChQ. Beliefs about choice in health and general domains were not discrete. The vast majority of participants endorsed having choices as positive. In contrast, beliefs about the value of making choice were more mixed. A greater endorsement of both these aspects of choice was related to higher educational status.
Results from this study indicate that choice can be usefully conceptualised as consisting of two separate constructs: having choices and making choices. The 8-item ChQ has an interpretable factor structure and has been shown to be reliable. It could be used in research to assess beliefs about the value of choice or in the clinical setting to establish whether a patient would prefer to be provided with options or to be managed in a more paternalistic way.
PMCID: PMC2529198  PMID: 18801278
beliefs; choice behaviour; health care; questionnaire design
15.  A systematic review of the psychometric properties of Quality of Life measures for school aged children with cerebral palsy 
BMC Pediatrics  2010;10:81.
This systematic review aimed to evaluate the psychometric properties and clinical utility of all condition specific outcome measures used to assess quality of life (QOL) in school aged children with cerebral palsy (CP).
Relevant outcome measures were identified by searching 8 electronic databases, supplemented by citation tracking. Two independent reviewers completed data extraction and analysis of the measures using a modified version of the CanChild Outcome Measures Rating Form.
From the 776 papers identified 5 outcome measures met the inclusion criteria: the Care and Comfort Hypertonicity Questionnaire (C&CHQ), the Caregiver Priorities and Child Health Index of Life with Disabilities (CPCHILD), CP QOL-Child, DISABKIDS and PedsQL 3.0 CP Module. There was evidence of construct validity for all five measures. Content validity was reported for all measures except PedsQL 3.0. The CPCHILD and CP QOL-Child were the only outcome measures to have reported data on concurrent validity. All measures, with the exception of one (C&CHQ) provided evidence of internal reliability. The CPCHILD and the CP-QOL-Child had evidence of test-retest reliability and DISABKIDS had evidence of inter-rater reliability. There were no published data on the responsiveness of these outcome measures.
The CPCHILD and the CP QOL-Child demonstrated the strongest psychometric properties and clinical utility. Further work is needed, for all measures, on data for sensitivity to change.
PMCID: PMC2995480  PMID: 21059270
16.  Health Related Quality of Life in Adolescents with Bladder Exstrophy-Epispadias as Measured by the Child Health Questionnaire-Child Form 87 
The Journal of urology  2012;188(5):1924-1929.
We determined health related quality of life as reported by adolescents with bladder exstrophy or epispadias using a validated generic instrument.
Materials and Methods
Adolescents age 11 to 18 years with bladder exstrophy or epispadias (57) completed a validated, generic, health related quality of life instrument, the CHQ-CF87 (Child Health Questionnaire-Child Form 87). Urinary incontinence, catheterization status, and medical and surgical history data were also obtained. Mean summary scores and 95% CIs for each subdomain of the CHQ-CF87 were calculated, and descriptively compared to 2 population based samples. In our sample health related quality of life outcomes by continence status were compared using univariate and multivariate analysis. However, this analysis was limited by a small sample size.
Mean age of the 49 patients with bladder exstrophy and the 8 with epispadias was 14.3 years, 67% were male and 81% were Caucasian. There were 31 participants who reported incontinence and the median number of lifetime surgeries was 9. The exstrophy population scored well in all subdomains of the instrument when descriptively compared to 2 large samples of adolescent populations. In our sample incontinent patients had lower scores by multivariate analysis in 7 of 10 domains and better scores in 3 of 10 domains, although these differences were not statistically significant.
Adolescents with bladder exstrophy and epispadias reported relatively good scores on the CHQ-CF87 when descriptively compared to other reference populations. This finding suggests that these children adapt well to the challenges of their condition. Analysis of the association of incontinence with health related quality of life was limited by the small sample size.
PMCID: PMC4085685  PMID: 22998914
quality of life; bladder exstrophy; epispadias; adolescent
17.  Reliability and validity of health status measurement by the TAPQOL 
Archives of Disease in Childhood  2005;90(4):351-358.
Background: In addition to clinical measures in the evaluation of paediatric interventions, health related quality of life (HRQoL) is an important outcome. The TAPQOL (TNO-AZL Preschool children Quality of Life) was developed to measure HRQoL in preschool children. It is a generic instrument consisting of 12 scales that cover the domains physical, social, cognitive, and emotional functioning.
Aims: To evaluate the feasibility, score distribution, internal consistency, test-retest reliability, and discriminative and concurrent validity of the TAPQOL multi-item scales in preschool children, aged 2–48 months. Also to evaluate the feasibility, reliability, and validity separately for infants (2–12 months old) and toddlers (12–48 months old).
Methods: Parents of a random general population sample of 500 preschool children were sent a questionnaire by mail. A random subgroup of 159 parents who participated received a retest after two weeks.
Results: The response rate was 83% at the test and 75% at the retest. There were few missing answers. Six scales showed ceiling effects. Nine scales had Cronbach's alphas >0.70. In general, score distributions and Cronbach's alphas were comparable for infants and toddlers. Test-retest showed no significant differences in mean scale scores; two scales had intra-class correlations <0.50. Five scales showed significant differences between children with no conditions versus children with two or more parent reported chronic conditions.
Conclusion: Results showed that the TAPQOL is a feasible instrument to measure HRQoL and support the reliability and discriminative validity of the majority of its scales for infants as well as toddlers.
PMCID: PMC1720358  PMID: 15781921
18.  Development of the Japanese version of the Pediatric Quality of Life Inventory™ Brain Tumor Module 
The Pediatric Quality of Life Inventory™ (PedsQL™) is a widely-used modular instrument for measuring health-related quality of life in children aged 2 to 18 years. The PedsQL™ Brain Tumor Module is comprised of six scales: Cognitive Problems, Pain and Hurt, Movement and Balance, Procedural Anxiety, Nausea, and Worry. In the present study, we developed the Japanese version of the PedsQL™ Brain Tumor Module and investigated its feasibility, reliability, and validity among Japanese children and their parents.
Translation equivalence and content validity were verified using the standard back-translation method and cognitive debriefing tests. Participants were recruited from 6 hospitals in Japan and the Children's Cancer Association of Japan, and questionnaires were completed by 137 children with brain tumors and 166 parents. Feasibility of the questionnaire was determined based on the amount of time required to complete the form and the percentage of missing values. Internal consistency was assessed using Cronbach's coefficient alpha. Test-retest reliability was assessed by retesting 22 children and 27 parents. Factorial validity was verified by exploratory factor analyses. Known-groups validity was described with regard to whole brain irradiation, developmental impairment, infratentorial tumors, paresis, and concurrent chemotherapy. Convergent and discriminant validity were determined using Generic Core Scales and State-Trait Anxiety Inventory for children.
Internal consistency was relatively high for all scales (Cronbach's coefficient alpha > 0.70) except the Pain and Hurt scale for the child-report, and sufficient test-retest reliability was demonstrated for all scales (intraclass correlation coefficient = 0.45-0.95). Factorial validity was supported through exploratory factor analysis (factor-item correlation = 0.33-0.96 for children, 0.55-1.00 for parents). Evaluation of known-groups validity confirmed that the Cognitive Problems scale was sensitive for developmental impairment, the Movement and Balance scale for infratentorial tumors or paresis, and the Nausea scale for a patient currently undergoing chemotherapy. Convergent and discriminant validity with the PedsQL™ Generic Core Scales and State-Trait Anxiety Inventory for children were acceptable.
The Japanese version of the PedsQL™ Brain Tumor Module is suitable for assessing health-related quality of life in children with brain tumors in clinical trials and research studies.
PMCID: PMC2873593  PMID: 20398254
19.  The reliability, validity, and preliminary responsiveness of the Eye Allergy Patient Impact Questionnaire (EAPIQ) 
The Eye Allergy Patient Impact Questionnaire (EAPIQ) was developed based on a pilot study conducted in the US and focus groups with eye allergy sufferers in Europe. The purpose of this study was to present the results of the psychometric validation of the EAPIQ.
One hundred forty six patients from two allergy clinics completed the EAPIQ twice over a two-week period during the fall and winter allergy seasons, along with concurrent measures of health status, work productivity, and utility. Construct validity, reliability (internal consistency and test-retest), concurrent, known-group, and clinical validities, and responsiveness of the EAPIQ were assessed. Known-group validity was assessed by comparing EAPIQ scale scores between patients grouped according to their self-rating of ocular allergy severity (no symptoms, very mild, mild, moderate, severe, very severe). Clinical validity was assessed by assessing differences in EAPIQ scores between groups of patients rated by their clinician as non-symptomatic, mild, moderate, and severe.
Results and Discussion
Results from the validation study suggested the deletion of 14 of 43 items (including embedded questions) that required patients to complete the percentage of time they were troubled by something (daily activity limitations/emotional troubles). These items yielded a significant amount of missing or inconsistent data (50%). The resulting factor analysis suggested four domains: symptoms, daily life impact, psychosocial impact, and treatment satisfaction. When included as separate scales, the symptom-bother and symptom-frequency scales were highly correlated (> 0.9). As a consequence, and due to superior discriminative validity, the symptom bother and frequency items were summed. All items met the tests for item convergent validity (item-scale correlation = 0.4). The success rate for item discriminant validity testing was 97% (item-scale correlation greater with own scale than with any other). The criterion for internal consistency reliability (alpha coefficient ≥ 0.70) was met for all EAPIQ scales (range 0.89–0.93), as was the criterion for test-retest reliability (intraclass correlation [ICC] ≥ 0.70). Largely moderate correlations between the scales of the EAPIQ and the mini Rhinoconjunctivitis Quality of Life Questionnaire (miniRQLQ) and low correlations with the Health Utilities Index 2/3 (HUI2/3) were indicative of satisfactory concurrent validity. The EAPIQ symptoms, Daily Life Impact, and Psychosocial Impact scales were able to distinguish between patients differing in eye allergy symptom severity, as rated by patients and clinicians, providing evidence of satisfactory known-group and clinical validities, respectively. Preliminary analyses indicated the EAPIQ Symptoms, Daily Life Impact, and Psychosocial Impact scales to be responsive to changes in eye allergies.
Following item reduction, construct validity, reliability, concurrent validity, known-group validity, and preliminary responsiveness were satisfactory for the EAPIQ in this population of ocular allergy patients.
PMCID: PMC1291386  PMID: 16259630
Patient functioning; ocular allergy; psychometric validation; EAPIQ; patient reported outcomes
20.  Measuring health-related quality of life in Hungarian children with heart disease: psychometric properties of the Hungarian version of the Pediatric Quality of Life Inventory™ 4.0 Generic Core Scales and the Cardiac Module 
The aim of the study was to investigate the psychometric properties of the Hungarian version of the Pediatric Quality of Life Inventory™ (PedsQL™) Generic Core Scales and Cardiac Module.
The PedsQL™ 4.0 Generic Core Scales and the PedsQL™ 3.0 Cardiac Module was administered to 254 caregivers of children (aged 2-18 years) and to 195 children (aged 5-18 years) at a pediatric cardiology outpatient unit. A postal survey on a demographically group-matched sample of the general population with 525 caregivers of children (aged 2-18 years) and 373 children (aged 5-18 years) was conducted with the PedsQL™ 4.0 Generic Core Scale. Responses were described, compared over subgroups of subjects, and were used to assess practical utility, distributional coverage, construct validity, internal consistency, and inter-reporter agreement of the instrument.
The moderate scale-level mean percentage of missing item responses (range 1.8-2.3%) supported the feasibility of the Generic Core Scales for general Hungarian children. Minimal to moderate ceiling effects and no floor effects were found on the Generic Core Scales. We observed stronger ceiling than floor effects in the Cardiac Module. Most of the scales showed satisfactory reliability with Cronbach's α estimates exceeding 0.70. Generally, moderate to good agreement was found between self- and parent proxy-reports in the patient and in the comparison group (intraclass correlation coefficient range 0.52-0.77), but remarkably low agreement in the perceived physical appearance subscale in the age group 5-7 years (0.18) and for the treatment II scale (problems on taking heart medicine) scale of the Cardiac Module in children aged 8-12 years (0.39). Assessing the construct validity of the questionnaires, statistically significant difference was found between the patient group and the comparison group only in the Physical Functioning Scale scores (p = 0.003) of the child self-report component, and in Physical (p = 0.022), Emotional, (p = 0.017), Psychosocial Summary (p = 0.019) scores and in the total HRQoL (health-related quality of life) scale score (p = 0.034) for parent proxy-report.
The findings generally support the feasibility, reliability and validity of the Hungarian translation of the PedsQL™ 4.0 Generic Core Scales and the PedsQL™ 3.0 Cardiac Module in Hungarian children with heart disease.
PMCID: PMC2834658  PMID: 20109201
21.  The PedsQL™ Oral Health Scale: feasibility, reliability and validity of the Brazilian Portuguese version 
Oral and orofacial problems may cause a profound impact on children’s oral health-related quality of life (OHRQoL) because of symptoms associated with these conditions that may influence the physical, psychological and social aspects of their daily life. The OHRQoL questionnaires found in the literature are very specific and are not able to measure the impact of oral health on general health domains. Consequently, the objective of this study was to evaluate the psychometric properties of the Portuguese version for Brazilian translation of the Pediatric Quality of Life Inventory™ (PedsQL™) Oral Health Scale in combination with the PedsQL™ 4.0 Generic Core Scales.
The PedsQL™ Oral Health Scale was forward-backward translated and cross-culturally adapted for the Brazilian Portuguese language. In order to assess the feasibility, reliability and validity of the Brazilian version of the instrument, a study was carried out in Belo Horizonte with 208 children and adolescents between 2 and 18 years-of-age and their parents. Clinical evaluation of dental caries, socioeconomic information and the Brazilian versions of the PedsQL™ Oral Health Scale, PedsQL™ 4.0 Generic Core Scales, Child Perceptions Questionnaire (CPQ11-14 and CPQ8-10) and Parental-Caregiver Perception Questionnaire (P-CPQ) were administered. Statistical analysis included feasibility (missing values), confirmatory factor analysis (CFA), internal consistency reliability, and test-retest intraclass correlation coefficients (ICC) of the PedsQL™ Oral Health Scale.
There were no missing data for both child self-report and parent proxy-report on the Brazilian version of the PedsQL™ Oral Health Scale. The CFA showed that the five items of child self-report and parent proxy-report loaded on a single construct. The Cronbach's alpha coefficients for child/adolescent and parent oral health instruments were 0.65 and 0.59, respectively. The test-retest reliability (ICC) for child self-report and parent proxy-report were 0.90 [95% confidence interval (CI) = 0.86-0.93] and 0.86 (95%CI = 0.81-0.90), respectively. The PedsQL™ Oral Health Scale demonstrated acceptable construct validity, convergent validity and discriminant validity.
These results supported the feasibility, reliability and validity of the Brazilian version of the PedsQL™ Oral Health Scale for child self-report for ages 5–18 years-old and parent proxy-report for ages 2–18 years-old children.
PMCID: PMC3425333  PMID: 22531004
Oral health; PedsQL; Quality of life; Validation; Child; Adolescent
22.  Reliability and validity of psychosocial and environmental correlates measures of physical activity and screen-based behaviors among Chinese children in Hong Kong 
Insufficient participation in physical activity and excessive screen time have been observed among Chinese children. The role of social and environmental factors in shaping physical activity and sedentary behaviors among Chinese children is under-investigated. The purpose of the present study was to assess the reliability and validity of a questionnaire to measure child- and parent-reported psychosocial and environmental correlates of physical activity and screen-based behaviors among Chinese children in Hong Kong.
A total of 303 schoolchildren aged 9-14 years and their parents volunteered to participate in this study and 160 of them completed the questionnaire twice within an interval of 10 days. Intraclass correlation coefficients (ICCs), kappa statistics, and percent agreement were performed to evaluate test-retest reliability of the continuous and categorical variables, respectively. Exploratory factor analyses (EFAs) were conducted to assess convergent validity of the emergent scales. Cronbach's alpha and ICCs were performed to assess internal and test-retest reliability of the emergent scales. Criterion validity was assessed by correlating psychosocial and environmental measures with self-reported physical activity and screen-based behaviors, measured by a validated questionnaire.
Reliability statistics for both child- and parent-reported continuous variables showed acceptable consistency for all of the ICC values greater than 0.70. Kappa statistics showed fair to perfect test-retest reliability for the categorical items. Adequate internal consistency and test-retest reliability were observed in most of the emergent scales. Criterion validity assessed by correlating psychosocial and environmental measures with child-reported physical activity found associations with physical activity in the self-efficacy scale (r = 0.25, P < 0.05), the peer support for physical activity scale (r = 0.25, P < 0.05) and home physical activity environmental (r = 0.14, P < 0.05). Children's screen-based behaviors were associated with the family support for physical activity scale (r = -0.22, P < 0.05) and parental role modeling of TV (r = 0.12, P = 0.053).
The findings provide psychometric support for using this questionnaire for examining psychosocial and environmental correlates of physical activity and screen-based behaviors among Chinese children in Hong Kong. Further research is needed to develop more robust measures based on the current questionnaire, especially for peer influence on physical activity and parental rules on screen-based behaviors.
PMCID: PMC3065395  PMID: 21385418
23.  Mothers’ reports of the difficulties that their children experience in taking methotrexate for Juvenile Idiopathic Arthritis and how these impact on quality of life 
Children who take methotrexate for juvenile idiopathic arthritis may experience side effects, including nausea and vomiting, leading to anticipatory nausea in some children, and fear of injections or blood tests. The aim of this study was to examine the prevalence and extent of these difficulties and their impact on quality of life.
Participants were mothers of children with JIA who were currently taking methotrexate (MTX). Mothers completed a questionnaire about MTX that was developed for the study, two questions from the treatment subscale of the Pediatric Quality of Life Inventory (PedsQL) Rheumatology scale to assess needle-related problems and the Child Health Questionnaire 50-item parent version (CHQ-PF50) to assess health-related quality of life (HRQoL).
171 mothers participated in the study. More than half of children were reported to have experienced one or more of: nausea or vomiting after taking MTX, anticipatory nausea, fear of blood tests or fear of injections. There was no significant difference in reported rates of sickness or needle-related problems between MTX responders (ACR70 or above), partial responders (ACR30 or ACR50) and non-responders. In multivariate analyses, variables that were significant independent predictors of one or more MTX-related difficulties included younger age, taking MTX subcutaneously and having a larger number of currently active joints. Feeling sick after taking MTX was a significant independent predictor of poorer scores on the physical summary scale of the CHQ-PF50. Anxiety about injections and feeling sick after taking MTX were significant independent predictors of poorer scores on the psychosocial summary scale.
Difficulties in taking MTX are experienced by a significant proportion of children with JIA and these may have an adverse impact on HRQoL. Approaches to help minimize these difficulties are required.
PMCID: PMC3679741  PMID: 23714105
Juvenile idiopathic arthritis; Methotrexate; Side effects; Intolerance; Anticipatory nausea; Psychological; Quality of life
24.  Health related quality of life after extremely preterm birth: a matched controlled cohort study 
The majority of infants born before the last trimester now grow up. However, knowledge on subsequent health related quality of life (HRQoL) is scarce. We therefore aimed to compare HRQoL in children born extremely preterm with control children born at term. Furthermore, we assessed HRQoL in relation to perinatal and neonatal morbidity and to current clinical and sociodemographic characteristics.
The Child Health Questionnaire (CHQ-PF50) and a general questionnaire were applied in a population based cohort of 10 year old children born at gestational age ≤ 28 weeks or with birth weight ≤ 1000 grams in Western Norway in 1991-92 and in term-born controls, individually matched for gender and time of birth. The McNemar test and paired t-tests were used to explore group differences between preterms and matched controls. Paired regression models and analyses of interaction (SPSS mixed linear model) were used to explore potential effects of sociodemographic and clinical characteristics on HRQoL in the two groups.
All 35 eligible preterm children participated. None had major impairments. Learning and/or attention problems were present in 71% of preterms and 20% of controls (odds ratio (OR): 7.0; 95% confidence interval (CI): 2.2 to 27.6). Insufficient professional support was described by 36% of preterm vs. 3% of control parents (OR: infinite; CI: 2.7 to infinite). Preterms scored lower on eight CHQ-PF50 sub-scales and the two summary scores, boys accounting for most of the deficits in areas of behavior, psychosocial functioning and parental burden. HRQoL was associated with learning and/or attention problems in both preterm and control children, significantly more so in preterms in areas related to health and parental burden. Within the preterm group, HRQoL was mostly unrelated to perinatal and neonatal morbidity.
HRQoL for children born extremely preterm, and particularly for boys, was described by parents to be inferior to that of children born at term, and sufficiently poor to affect the daily life of the children and their families. Learning and/or attention problems were reported for a majority of preterms, strongly influencing their HRQoL.
PMCID: PMC2894784  PMID: 20492724
25.  Reliability of Internet- Versus Telephone-Administered Questionnaires in a Diverse Sample of Smokers 
Smoking is more prevalent among lower-income individuals and certain racial/ethnic minorities. Addressing tobacco cessation among diverse populations is an urgent public health priority. As Internet use continues to rise among all segments of the US population, Web-based interventions have enormous potential to reach priority populations. Conducting Web-based smoking cessation research in priority populations requires psychometrically sound measurement instruments. To date, only one published study has examined the psychometric properties of Internet-administered measures commonly used in Web-based cessation trials. However, the sample was homogeneous with regard to race/ethnicity and income. We sought to replicate and extend these findings in a more diverse sample of smokers.
The aim was to examine the internal consistency and test-retest reliability of measures commonly used in smoking cessation clinical trials among racial/ethnic minorities and smokers with lower income.
Participants were enrolled in a randomized trial of the efficacy of an Internet smoking cessation program between June 2005 and September 2006. Following a baseline telephone assessment and randomization into the parent trial, participants were recruited to the reliability substudy. In phase I of recruitment, all participants in the parent trial were recruited to the substudy; in phase II, all consecutive racial/ethnic minority participants in the parent trial were recruited. Race and ethnicity were assessed via self-report using two standard items from the US Office of Management and Budget. An email was sent 2 days after the telephone assessment with a link to the Internet survey. Measures examined were quit methods, perceived stress, depression, social support, smoking temptations, alcohol use, perceived health status, and income. Internal consistency and test-retest reliability of Internet- versus telephone-administered measures were examined within four strata defined by race/ethnicity (non-Hispanic White, racial/ethnic minority) and annual household income (US $40,000 or less, more than $40,000).
Of the 442 individuals invited, 319 participated (72% response rate): 52.4% were non-Hispanic White, 22.9% Black, 11.6% Hispanic, 7.8% Asian, 4.4% American Indian / Alaska Native, and 1% Native Hawaiian / Other Pacific Islander. About half (49.4%) reported an annual household income of US $40,000 or less, and 25.7% had a high school degree or less. Test-retest reliability was satisfactory to excellent across all strata for the majority of measures examined: 9 of 12 continuous variables had intraclass correlation coefficients ≥ 0.70, and 10 of 18 binary variables and both ordinal variables had kappa coefficients ≥ 0.70. Test-retest reliability of several quit methods varied across strata.
Race/ethnicity and income do not affect the psychometric properties of most Internet-administered measures examined. This knowledge adds to the confidence of conducting Web-based smoking cessation research and strengthens the scientific rigor of collecting information via the Internet on racial/ethnic minority and low-income subgroups.
Trial registration NCT00282009 (parent trial)
PMCID: PMC2483847  PMID: 18364345
Reliability; smoking; Internet; diversity; measurement; psychometrics; minority groups; questionnaires; socioeconomic factors; social class; poverty; African Americans; Hispanic Americans

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