Factors influencing agreement between child self-report and parent proxy-reports on the Pediatric Quality of Life Inventory™ 4.0 (PedsQL™) generic core scales

BACKGROUND: In situations where children are unable or unwilling to respond for themselves, measurement of quality of life (QOL) is often obtained by parent proxy-report. However the relationship between child self and parent proxy-reports has been shown to be poor in some circumstances. Additionally the most appropriate statistical method for comparing ratings between child and parent proxy-reports has not been clearly established. The objectives of this study were to assess the: 1) agreement between child and parent proxy-reports on an established child QOL measure (the PedsQL™) using two different statistical methods; 2) effect of chronological age and domain type on agreement between children's and parents' reports on the PedsQL™; 3) relationship between parents' own well-being and their ratings of their child's QOL. METHODS: One hundred and forty-nine healthy children (5.5 – 6.5, 6.5 – 7.5, and 7.5 – 8.5 years) completed the PedsQL™. One hundred and three of their parents completed these measures in relation to their child, and a measure of their own QOL (SF-36). RESULTS: Consistency between child and parent proxy-reports on the PedsQL™ was low, with Intra-Class correlation coefficients ranging from 0.02 to 0.23. Correlations were higher for the oldest age group for Total Score and Psychosocial Health domains, and for the Physical Health domain in the youngest age group. Statistically significant median differences were found between child and parent-reports on all subscales of the PedsQL™. The largest median differences were found for the two older age groups. Statistically significant correlations were found between parents' own QOL and their proxy-reports of child QOL across the total sample and within the middle age group. CONCLUSION: Intra-Class correlation coefficients and median difference testing can provide different information on the relationship between parent proxy-reports and child self-reports. Our findings suggest that differences in the levels of parent-child agreement previously reported may be an artefact of the statistical method used. In addition, levels of agreement can be affected by child age, domains investigated, and parents' own QOL. Further studies are needed to establish the optimal predictors of levels of parent-child agreement

Health-related Quality of Life in Preschool Children with Wheezing and Dyspnea: Preliminary Results from a Random General Population Sample

Respiratory symptoms have a high prevalence among preschool children (5-20%). This study evaluated the impact of parent-reported respiratory symptoms on health-related quality of life (HRQOL) using the TNO-AZL Preschool Children Quality of Life (TAPQOL) questionnaire. A random general population sample of 500 parents of 3-46-month old children was mailed a questionnaire containing the TAPQOL and questions on the prevalence of respiratory symptoms. The impact of respiratory symptoms on HRQOL was analysed using the Mann-Whitney test and linear regression analysis. Response rate was 83%. The prevalence of combined "wheezing and dyspnea" during the past 4 weeks was 10%. For the sleeping, appetite, lung problems, skin problems, communication, and positive mood TAPQOL scales, HRQOL was significantly lower in the subgroup with "wheezing and dyspnea" (n = 41) than in the subgroup without symptoms (n = 321); large effect sizes were observed for lung problems (2.06) and sleeping (0.80). In multivariate analysis, adjusted for age and gender of the child, "wheezing and dyspnea" were associated with the scales sleeping, appetite, lung problems, communication, and positive mood (p < 0.05). In conclusion, decreases in HRQOL among preschoolers with parent-reported respiratory symptoms are measurable with the TAPQOL. We recommend studying the impact of doctor-diagnosed respiratory symptoms on HRQOL in future studie

Patient satisfaction in pediatric outpatient settings from the parents’ perspective - The Child ZAP: A psychometrically validated standardized questionnaire

<p>Abstract</p> <p>Background</p> <p>Patient surveys constitute a valuable source of information in patient-focused health care. The objective of this study was to develop and validate a standardized, patient centered, quantitative instrument to assess parent satisfaction in ambulatory pediatric care to be used in quality management and benchmarking activities, the Child-ZAP.</p> <p>Methods</p> <p>A preliminary version of the survey (38 items) was conducted in n = 19 pediatric practices. After psychometric testing a modified Child-ZAP was tested in a second survey (n = 20 new pediatric practices). Data from n = 979 patients were available for analysis.</p> <p>Results</p> <p>The final version of the Child-ZAP contains eight dimensions, three "Child-Scales" and five "Parent-Scales". Confirmatory factor analysis confirms the three hypothesized child dimensions as well as the five parent dimensions. The factorial structure is confirmed in subgroups of younger and older children.</p> <p>Conclusions</p> <p>With satisfactory to good results for validity and reliability testing, the final Child-ZAP is applicable in pediatric ambulatory care for children of all age groups.</p

Validity, reliability and discriminative capacity of an electronic quality of life instrument (Pelican) for childhood asthma in the Netherlands

Item does not contain fulltextPURPOSE: To assess psychometric properties of the Pelican instrument, an online Dutch self-administered Quality of Life instrument for childhood asthma for scientific and clinical use. METHODS: A cohort study was done in two asthma populations and healthy children. One asthma population had assessment at start, 4 and 8 weeks. The other asthma population and healthy children had one assessment. All children were aged 6-12 years. Children completed the Pelican instrument, Paediatric Asthma Quality of Life Questionnaire, feeling thermometer and Childhood Asthma Control Test. Lung function and fraction exhaled nitric oxide were measured. Parents completed Functional Status II, Asthma Control Questionnaire, Childhood Asthma Control Test questionnaires and symptom diaries. We assessed interpretability, structural validity, internal consistency, reliability, construct and discriminative validity of the Pelican instrument. RESULTS: Eighty-five asthmatic (mean age 8.5 years) and 49 healthy children (mean age 8.4 years) participated. The Pelican instrument has 5 domains with 21 items after factor analysis. Internal consistency was 0.89 (CI 0.85-0.92), domain reliability showed Cronbach's alpha's from 0.64 to 0.76 and item-to-scale correlations from 0.61 to 0.81. Test-retest reliability was confirmed ICC = 0.88 (CI 0.79-0.93). Construct validity was demonstrated by significant moderate correlations with other relevant asthma outcomes like PAQLQ (r = -0.59, p < 0.01). Discriminative capacity between controlled or uncontrolled asthma (t = 3.20, p < 0.01, Delta = 0.64) and asthma versus healthy subjects (t = 6.31, p < 0.01, Delta = 0.94) was found. CONCLUSIONS: The psychometric properties of the Pelican instrument were acceptable in Dutch paediatric asthma patients between 6 and 12 years old