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Health-related quality of life (HRQOL) assessment in children and adolescents with chronic health conditions is increasingly considered as a relevant topic. The aim of the EU-funded DISABKIDS project is to develop, test, and implement European instruments for the assessment of HRQOL of children and adolescents with disabilities and their families. The current paper describes the development and pilot testing of a chronic generic HRQOL measure. Using literature searches, expert consulting and focus groups with children/adolescents and their families, items of the instruments were developed and translated into the respective languages. A pilot test with 360 children and adolescents was conducted. Children and adolescents (8-12, 13-16 years) with different chronic health conditions (asthma, epilepsy, diabetes, arthritis, atopic dermatitis, cerebral palsy, and cystic fibrosis) as well as their families were included. Data were analysed according to predefined psychometric and content criteria. Psychometric analyses resulted in a 56-item chronic generic HRQOL questionnaire with six domains ('Medication', 'Physical', 'Emotion', 'Independence', 'Social Inclusion', 'Social Exclusion') with acceptable internal consistency. [ABSTRACT FROM AUTHOR]

Background The home environment has a significant influence on children's physical activity, sedentary behavior, dietary intake, and risk for obesity and chronic disease. Our understanding of the most influential factors and how they interact and impact child behavior is limited by current measurement tools, specifically the lack of a comprehensive instrument. HomeSTEAD (the Home Self-administered Tool for Environmental assessment of Activity and Diet) was designed to address this gap. This new tool contains four sections: home physical activity and media equipment inventory, family physical activity and screen time practices, home food inventory, and family food practices. This paper will describe HomeSTEAD's development and present reliability and validity evidence for the first section. Methods The ANGELO framework guided instrument development, and systematic literature reviews helped identify existing items or scales for possible inclusion. Refinement of items was based on expert review and cognitive interviews. Parents of children ages 3-12 years (n = 125) completed the HomeSTEAD survey on three separate occasions over 12-18 days (Time 1, 2, and 3). The Time 1 survey also collected demographic information and parent report of child behaviors. Between Time 1 and 2, staff conducted an in-home observation and measured parent and child BMI. Kappa and intra-class correlations were used to examine reliability (test-retest) and validity (criterion and construct). Results Reliability and validity was strong for most items (97% having ICC > 0.60 and 72% having r > 0.50, respectively). Items with lower reliability generally had low variation between people. Lower validity estimates (r < 0.30) were more common for items that assessed usability and accessibility, with observers generally rating usability and accessibility lower than parents. Small to moderate, but meaningful, correlations between physical environment factors and BMI, outside time, and screen time were observed (e.g., amount of child portable play equipment in good condition and easy to access was significantly associated with child BMI: r = −0.23), providing evidence of construct validity. Conclusions The HomeSTEAD instrument represents a clear advancement in the measurement of factors in the home environment related to child weight and weight-related behaviors. HomeSTEAD, in its entirety, represents a useful tool for researchers from which they can draw particular scales of greatest interest and highest relevance to their research questions. [ABSTRACT FROM AUTHOR]

Background: The Questionnaire on Pain caused by Spasticity (QPS) is a modular patient- and observer-reported outcome measure of spasticity-related pain (SRP) in children with cerebral palsy (CP). Originally developed for an English-speaking population, we conducted a psychometric validation of a recently developed Chinese language version of the QPS.Methods: This was a prospective, observational study involving 137 children/adolescents with CP and upper and/or lower limb spasticity and their parents at three sites in China. Six QPS modules were used, three each for upper and lower limb SRP assessment: a patient self-report module; an interviewer-administered module used by site staff based on the cognitive, communicative, and motor abilities of a patient; and a parent/caregiver module administered for all children as an observer-reported outcome to complement the patient-reported outcome. If no assessment by the patient was possible because of age or cognitive impairments, only the parent/caregiver module was completed. Two visits with a 3-week interval provided data to evaluate and establish administrative ease of use, scoring of the QPS (factor analyses, Rasch analyses), reliability (Cronbach's α, intraclass correlation coefficient), validity (correlations with quality of life [PedsQL™], motor impairment [Gross Motor Function Classification System, Gross Motor Function Measure-66, Manual Ability Classification System], and spasticity [Ashworth Scale, Modified Tardieu Scale]).Results: For most children, clinic staff reported no difficulties associated with general QPS use or deciding which module to use. Children (and parents) who reported more demanding activities also reported higher levels of associated SRP (or observed SRP behavior). Activity-related SRP items were combined for a total QPS score. Cronbach's α was low for child self-report, but was acceptable for interviewer-administered and parent reports on SRP. Test-retest reliability was high for all modules. Moderate-strong associations were frequently seen between QPS and quality of life, and were particularly strong in the child self-report group. Relatively weak associations were observed between QPS and motor impairment and spasticity.Conclusions: This first study was successful in providing initial evidence for the psychometric properties. Clinic staff were able to administer the QPS modules easily, and both children and parents were able to complete the designated QPS appropriately. [ABSTRACT FROM AUTHOR]

Background: This study aims to cross-culturally adapt the original English-language COHIP-SF 19 to Arabic culture and to test its psychometric properties in a community sample.Methods: The Arabic COHIP-SF 19 was developed and its psychometric properties were examined in a population-based sample of 876 schoolchildren who were aged 12 years of age, in Benghazi, Libya. The Arabic COHIP-SF 19 was tested for its internal consistency, reproducibility, construct validity, factorial validity and floor as well as ceiling effects. A Mann-Whitney U test was used to compare the mean scores of COHIP-SF 19 by participants' caries status and self-reported oral health rating, satisfaction and treatment need.Results: The Arabic COHIP-SF 19 was successfully and smoothly developed. It showed an acceptable level of equivalence to the original version. Overall, the internal consistency and reproducibility were acceptable to excellent, with a Cronbach's alpha of 0.84 and an intra-class correlation coefficient (ICC) of 0.76. All hypotheses predefined to test construct validity were confirmed. That is, children who had active dental caries, and who rated their oral health as poor, were not satisfied with their oral health or indicated the need of treatment had lower COHIP-SF 19 scores (P < 0.05). Floor or ceiling effects were not observed. The exploratory Factorial analysis suggested a 4-component solution and deletion of one item.Conclusion: The Arabic COHIP-SF 19 was successfully developed. The measure demonstrated satisfactory reliability and validity to estimate OHRQoL in a representative sample of 12-year-old schoolchildren. [ABSTRACT FROM AUTHOR]

Background: The EQ-5D-Y, an outcome measure of Health Related Quality of Life (HRQoL) in children, was developed by an international task team in 2010. The multinational feasibility, reliability and validity study which followed was undertaken with mainly healthy children. The aim of this study was to investigate the psychometric properties of the EQ-5D-Y when used to assess the HRQoL of children with different health states.Method: A sample of 224 children between eight and twelve years were grouped according to their health state. The groups included 52 acutely ill children, 67 children with either a chronic health condition or disability and 105 mostly healthy, mainstream school children as a comparator. They were assessed at baseline, at three months and at six months. An analysis of the psychometric properties was performed to assess the reliability, validity and responsiveness of the EQ-5D-Y in the different groups of children. Cohen's kappa, the intraclass correlation coefficient, Pearson Chi-square, Kruskal-Wallis ANOVA and effect size of Wilcoxon Signed-rank test were used to determine the reliability, validity and responsiveness of the instrument.Results: The EQ-5D-Y dimensions were found to be reliable on test-retest (kappa varying from 0.365 to 0.653), except for the Usual Activities dimension (kappa 0.199). The Visual Analogue Scale (VAS) was also reliable (ICC = 0.77). Post-hoc analysis indicated that dimensions were able to discriminate between acutely ill and healthy children (all differences p < 0.001). The acutely ill children had the lowest ranked VAS (median 50, range 0-100), indicating worst HRQoL and was the only group significantly different from the other three groups (p < 0.001 in all cases). Convergent validity between all similar EQ-5D-Y and PedsQL, WeeFIM and Faces Pain Scale dimensions was only evident in the acutely ill children. As expected the largest treatment effect was also observed in these children (Wilcoxon Signed-rank test for VAS was 0.43). Six of the nine therapists who took part in the study, found the measure quick and easy to apply, used the information in the management of the child and would continue to use it in future.Conclusions: The EQ-5D-Y could be used with confidence as an outcome measure for acutely-ill children, but demonstrated poorer psychometric properties in children with no health condition or chronic conditions. It appears to be feasible and useful to include the EQ-5D-Y in routine assessments of children. [ABSTRACT FROM AUTHOR]

Background: The Child Oral Health Impact Profile (COHIP) is an Oral Health Related Quality of Life (OHRQOL) tool that assesses the impact of oral diseases on quality of life in children. This study aimed to assess the validity of the COHIP French questionnaire (45 items) and to evaluate the OHRQOL of 12-years children in New Caledonia.Methods: After cultural adaptation of the COHIP questionnaire, data were collected from clinical oral examinations and self-administered questionnaires in a representative sample of children aged 12 years in New Caledonia. Questions related to socio-demographic status or children's perception of their oral and general health were added to the COHIP questionnaire. Studying the association between COHIP scores and health subjective perceptions or dental status indicators assessed concurrent and discriminant validity. The items of the COHIP were subjected to principal components analysis. Finally, reproducibility and reliability were evaluated using Intraclass Correlation Coefficients (ICC) and Cronbach's alpha coefficient.Results: Two hundred and thirty-six children participated in the main study; mean age was 12.6 ± 0.31 years, 55.1 % were girls and diverse ethnic groups were represented. A preliminary reliability analysis has led to calculate COHIP scores with 34 items as in the English version, scores ranged from 35 to 131 (mean ± SD, 101.9 ± 16.84). Lower COHIP scores were significantly associated with the self-perception of poor general or oral health. COHIP was able to discriminate between participants according to gender, ethnic group, oral hygiene, dental attendance, dental fear and the presence of oral diseases. Test-retest reliability and scale reliability were excellent (ICC = 0.904; Cronbach's alpha coefficient = 0.880). Four components were identified from the factor analysis.Conclusion: The French 34-items COHIP showed excellent psychometric properties. Further testing will examine the structure and utility of the instrument in both clinical and epidemiological samples. [ABSTRACT FROM AUTHOR]

Background: Feeding practices are commonly examined as potentially modifiable determinants of children's eating behaviours and weight status. Although a variety of questionnaires exist to assess different feeding aspects, many lack thorough reliability and validity testing. The Feeding Practices and Structure Questionnaire (FPSQ) is a tool designed to measure early feeding practices related to non-responsive feeding and structure of the meal environment. Face validity, factorial validity, internal reliability and cross-sectional correlations with children's eating behaviours have been established in mothers with 2-year-old children. The aim of the present study was to further extend the validity of the FPSQ by examining factorial, construct and predictive validity, and stability. Methods: Participants were from the NOURISH randomised controlled trial which evaluated an intervention with first-time mothers designed to promote protective feeding practices. Maternal feeding practices (FP) and child eating behaviours were assessed when children were aged 2 years and 3.7 years (n = 388). Confirmatory Factor analysis, group differences, predictive relationships, and stability were tested. Results: The original 9-factor structure was confirmed when children were aged 3.7 ± 0.3 years. Cronbach's alpha was above the recommended 0.70 cut-off for all factors except Structured Meal Timing, Over Restriction and Distrust in Appetite which were 0.58, 0.67 and 0.66 respectively. Allocated group differences reflected behaviour consistent with intervention content and all feeding practices were stable across both time points (range of r = 0.45-0.70). There was some evidence for the predictive validity of factors with 2 FP showing expected relationships, 2 FP showing expected and unexpected relationships and 5 FP showing no relationship. Conclusions: Reliability and validity was demonstrated for most subscales of the FPSQ. Future validation is warranted with culturally diverse samples and with fathers and other caregivers. The use of additional outcomes to further explore predictive validity is recommended as well as testing test-retest reliability of the questionnaire. [ABSTRACT FROM AUTHOR]

Objective: To compare the health-related quality of life (HRQL) of 326 children and adolescents aged 6-17 years living in home-based foster care in metropolitan Adelaide, South Australia with the HRQL of a random sample of 3,582 children aged 6-17 years living in the community in Australia.Method: In both groups, HRQL was assessed using the 50-item version of the Child Health Questionnaire (CHQ-PF50) completed by caregivers/parents, and the 87-item self-report version of the Child Health Questionnaire (CHQ-CF87) completed by 13-17 year olds.Results: Young people in home-based foster care had significantly poorer HRQL in a wide range of different domains than those in the general community. Furthermore, among children in home-based foster care, those with mental health problems had significantly poorer HRQL in many domains than those without mental health problems. Demographic and placement characteristics of the children in home-based foster care were not significantly associated with differences in HRQL.Conclusion: The findings highlight the importance of providing services and resources to improve the quality of life of children living in home-based foster care. [ABSTRACT FROM AUTHOR]