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Purpose: To derive and evaluate a shorter self-report Child Health Questionnaire (CHQ) legacy measure for use in research and clinical trials/care., Methods: Stepwise regression, factor analysis, and item scaling principles were used to derive and guide item selection, using data from a large general sample in the Netherlands (n = 933). Feasibility was assessed in a school sample (n = 114) and item internal consistency, discriminant validity, floor, and ceiling effects were evaluated using an external larger validation sample in the US (n = 1468). Reliabilities were estimated using Cronbach's alpha. Relative precision (RP), the ability to distinguish between clinical subgroups, was computed by comparing the proportion of variance explained by the short-form scales vs. respective full-length scales., Results: The CHQ-CF was reduced from 87 to 45 items. The median alpha coefficient was 0.89. Ninety-seven to 100% scaling successes for item discriminant validity were observed. Floor effects were not observed; some ceiling effects were detected. RP estimates ranged from 0.73 to 1.37., Conclusion: The CHQ-SF45 is reliable and valid and exceeds item level scaling criteria.

Purpose: To describe the development of pediatric family relationships measures, with versions for child self-report (8-17 years) and parent-report for children 5-17 years old. Measures were created for integration into the Patient Reported Outcomes Measurement Information System (PROMIS ® )., Methods: Semi-structured interviews with 10 experts, 24 children, and 8 parents were conducted to elicit and clarify essential elements of family relationships. A systematic literature review was conducted to identify item concepts representative of each element. The concepts were transformed into items that were iteratively revised based on cognitive interviews (n = 43 children) and item translatability review. Psychometric studies involving 2846 children and 2262 parents were conducted to further refine and validate the instruments., Results: Qualitative procedures supported the development of content valid Family Relationships item banks. Final child- and parent-report item banks each contain 47 items. Unidimensional item banks were calibrated using IRT-modeling to estimate item parameters representative of the US population and to enable computerized adaptive test administration. Four- and eight-item short forms were constructed for standard fixed format administration. All instruments have strong internal consistency, retest-reliability, and provide precise estimates of various levels of family relationship quality. Preliminary evidence of the instruments' validity was provided by known-group comparisons and convergence with legacy measures., Conclusion: The PROMIS pediatric Family Relationships measures can be applied in research focused on determinants, outcomes, and the protective effects of children's subjective family relationship experiences.

Purpose: The present study investigated the higher-order summary factor structure of the Child Health Questionnaire Parent Form-50 (CHQ) in a sample of children with new-onset epilepsy. The secondary aim was to identify risk factors predicting health-related quality of life (HRQL) 24 months post-diagnosis., Methods: Data came from the Health-related Quality of Life in Children with Epilepsy Study (HERQULES, N = 374), a multi-site study documenting HRQL among children with epilepsy from diagnosis through 24 months. Confirmatory factor analysis was used to determine goodness of fit between the original structure of the CHQ and HERQULES data. Multiple regression was used to identify risk factors at diagnosis for HRQL at 24 months., Results: The models demonstrated good fit: baseline: CFI = 0.945; TLI = 0.941; WRMR = 1.461; RMSEA = 0.058; 24 months: CFI = 0.957; TLI = 0.954; WRMR = 1.393; RMSEA = 0.055. Factor loadings were high and no cross-loadings observed (first order: λ = 0.27-0.99, 0.24-0.98; second order: λ = 0.69-0.86, 0.54-0.92; p < 0.001 for all). Controlling for HRQL at diagnosis, predictors for better 24-month HRQL were as follows: physical health: fewer cognitive problems (p = 0.023) and parents with fewer depressive symptoms (p = 0.049); psychosocial health: older parent age (p = 0.043), fewer behavior problems (p = 0.004), and families with better functioning (p = 0.008) and fewer demands (p = 0.009)., Conclusions: The CHQ higher-order summary factor structure was replicated in a sample of children with new-onset epilepsy, and child and family risk factors at diagnosis were found to predict HRQL 24 months post-diagnosis. These findings suggest it is possible to identify at-risk children early in the illness process and provide impetus for adopting family-centered care practices.

Purpose: Examine the health-related quality of life of 5-6-year-old underweight, overweight and obese children., Methods: Our cross-sectional study included 3,227 parent-child dyads from the "Be active, eat right" study. Parents completed questionnaires regarding child and parental characteristics. Health-related quality of life of the child was measured using the Child Health Questionnaire Parent Form 28. Children were classified normal weight, overweight, obese, severely obese, and underweight according to the international age and gender BMI cutoff points. Bootstrap analyses were performed for general linear models corrected for potential confounding variables., Results: Severely obese children (β, -2.60; 95% CI, -4.80 to -0.57, p < 0.01) and underweight children (β, -1.11; 95% CI, -1.85 to -0.39, p < 0.01) had lower parent-reported scores on the physical summary scale. On the physical functioning profile scale parents of overweight and severely obese children also reported statistically significant lower scores (p < 0.05 and p < 0.01, respectively).There were no significant differences regarding the psychosocial summary scale scores between the different weight categories., Conclusion: Underweight and overweight children experience impaired health-related quality of life on the physical functioning domain. Physicians, teachers and parents should be aware of the possible negative impact on health-related quality of life in underweight and overweight 5-6-year-old children.

Purpose: To derive and evaluate a shorter infant/toddler quality of life questionnaire (ITQOL) for use in clinical care., Methods: Stepwise regression, factor analysis, and item-scaling principles were used to derive and guide item selection using data from a large general sample in the Netherlands (n = 5,211) and a "wheezing illness" sample (n = 138). Item internal consistency, discriminant validity, and floor and ceiling effects were evaluated using a general Dutch sample (Salland Region n = 410) and two clinical samples: Functional abdominal pain (FAP, n = 81) and Burn (n = 194). Reliabilities were estimated using Cronbach's alpha. Relative precision (RP), the ability to distinguish between clinical subgroups, was computed by comparing the proportion of variance explained by the short-form scales versus respective full-length scales., Results: The ITQOL was reduced from 97 to 47 items. Median alpha coefficients were 0.77 Salland sample, 0.76 (FAP), and 0.84 (Burn). Ninety-one to 100 % scaling successes for item discriminant validity were observed for 21 of 24 tests (8 scales, 3 samples). Floor effects were not observed; some ceiling effects were detected. RP estimates in the Salland sample ranged from 2.40 (physical abilities) to 0.58 (temperament and moods). RP estimates in the FAP sample were 0.85 (bodily pain), 1.36 (temperament and moods) and 1.62 (parental-impact emotional) and for Burn, 1.51 (temperament and moods) and 0.59 (general health perceptions)., Conclusion: The ITQOL-SF47 is reliable and valid and exceeds item-level scaling criteria.

Purpose: To assess whether the health-related quality of life of infants from ethnic minority groups differs from the health-related quality of life of native Dutch infants and to evaluate whether infant health and family characteristics explain the potential differences., Methods: We included 4,506 infants participating in the Generation R Study, a longitudinal birth cohort. When the child was 12 months, parents completed the Infant Toddler Quality of Life Questionnaire (ITQOL); ITQOL scale scores in each ethnic subgroup were compared with scores in the Dutch reference population. Influence of infant health and family characteristics on ITQOL scale scores were evaluated using multivariate regression models., Results: Infants from ethnic minority groups presented significantly lower ITQOL scale scores compared to the Dutch subgroup (e.g., Temperament and Moods scale: median score of Turkish subgroup, 70.8 (IQR, 15.3); median score of Dutch subgroup, 80.6 (IQR, 13.9; P < 0.001)). Infant health and family characteristics mediated an important part of the association between the ethnic minority status and infant health-related quality of life. However, these factors could not fully explain all the differences in the ITQOL scale scores., Conclusions: Parent-reported health-related quality of life is lower in infants from ethnic minority groups compared to native Dutch infants, which could partly be explained by infant health and by family characteristics.

Purpose: This study compares HRQOL among subgroups of infants with asthma-like symptoms to a subgroup without such symptoms and examines independent associations between asthma-like symptoms during the first year of life and HRQOL at age 12 months., Methods: Our study sample included 5,000 infants participating in the Generation R study. Their parents completed structured questionnaires to obtain information on asthma-like symptoms, HRQOL, infants', and maternal characteristics. Asthma-like symptoms were defined according to the number of positive answers to 12 items on lower respiratory symptoms. HRQOL was measured using the ITQOL. Higher scores indicated better HRQOL., Results: Infants with asthma-like symptoms had significantly lower HRQOL scores for all ITQOL scales. Among the subgroup with severe symptoms (4% of the infants), relevant deficits in HRQOL were observed for most ITQOL scales, particularly for General Health, Bodily Pain, and Family Activities (effect sizes ≥ 0.8). In multivariate linear models, asthma-like symptoms were independently associated with 6 ITQOL scales. The population attributable risks were especially high for Family Activities, General Health, Parental Emotional, and Parental Time., Conclusions: Asthma-like symptoms during the first year of life are associated with impaired quality of life at age 12 months. At population level, asthma-like symptoms were associated with lower HRQOL, regardless of symptom severity.

Aim: The aim of this paper is to describe the Generation R study as a template that enables candidate gene study and genome-wide association study regarding health-related quality of life (HRQOL) of mothers and their young children., Methods: Generation R is a population-based prospective cohort study from fetal life onwards in Rotterdam, The Netherlands. Children were born in 2002-2006. Blood from mothers and placenta cord blood were sampled. Mothers' HRQOL was measured 5 times during pregnancy and after birth using SF-12 and EQ-5D. Children's HRQOL was measured 5 times between age 1 and 5/6 years using Infant-Toddler Quality Of Life questionnaire (ITQOL), Health Status Classification System PreSchool (HSCS-PS) and Child Health Questionnaire Parent Form 28 items (CHQ-PF28), respectively., Results: DNA is available for 8,055 mothers and 5,908 children. Genotyping of various candidate genes and a genome-wide association (GWA) scan (Illumina 610K) of child DNA were done. A template for gene-HRQOL analyses is provided. We start with candidate gene study on HRQOL of mothers and children. Gene-environment interaction and interaction with medical indicators of health status will be explored. Next, GWA study on HRQOL will be performed., Conclusions: Gaining insight into the determinants of HRQOL is essential to assisting efforts in health policy and clinical application to improve well-being and health. In the future, it might be possible to complement HRQOL assessments by examinations of genetic markers. Strengths and weaknesses of the Generation R study are discussed.

Aims: 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., Methods: 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., Results: The participation rate was 87%; age range 13-17 years. The internet administration resulted in fewer missing answers. All but one multi-item scale showed internal consistency reliability (Cronbach's alpha > 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

Objective: 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)., Methods: 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-[Formula: see text] years old; n = 217) were mailed ITQOL and TAPQOL questionnaires; a retest was sent after two weeks., Results: Feasibility: The response was >or=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 alpha >0.70. Test-retest Intraclass Correlation Coefficients (ICCs) were moderate or adequate (>or=0.50; p < 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)., Conclusions: 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.

The aim of the study was to evaluate the psychometric properties of the German translation of the Child Health Questionnaire (CHQ). Parents of two clinical samples were asked to rate the quality of life of their children using the German version of the CHQ. Item internal consistency (item-scale correlation) and internal consistency of scales were tested; quartiles and factor analysis were conducted. The results of the German clinical samples were compared with US clinical samples (t-test). The two clinical German sub-groups were compared using multivariate analysis (MANOVA). The psychometric testing of the CHQ showed good results. Internal consistency of the hypothesized scales were all higher than 0.70. The results of the factor analysis confirmed the results of the US norm sample: As expected, the subscales loaded on two factors explaining 57.4% of the total variance. The group comparison supported the discriminative properties of the CHQ. Preliminary psychometric findings support use of the German version of the CHQ. The next step will be the testing of healthy German samples and development of norm scores.