Quality of life in childhood.

The aim of this thesis was to develop a child self-report quality of life (QOL) measure for children below eight years. Two questions were central to the development of our instrument. First, can children below eight years self-report on their thoughts, feelings, and lives? Second, if so what are the best ways to gain self-reports from children? In answering these questions, we produced a set of guidelines that can be applied by researchers developing self-report measures for children. Studies 1 and 2 report the initial validation of our child self-report QOL measure (the teddy bear QOL measure, TedQL.l & 2). In Study 1, children's TedQL.l scores were positively correlated to their scores on an established measure (the PedsQLTM4.0). In Study 2, the response scale used to complete TedQL.2 items impacted on the psychometric properties of our measure. Study 3 reported further development of the content of our measure, using interview data from children about their lives. Based on the results of Study 3, a new version of our measure was developed (due to deletion, alteration, and addition of items). Study 4 established the most appropriate response scale for the TedQL.4, by comparing the psychometric properties of children's responses to TedQL.3 items across three response scales. Study 4 showed that children used concrete examples of specific situations to answer the TedQL.3 items, which may explain why young children's self reports are less stable over time compared to older children. The analysis in Study 4 revealed eight items that could be removed from the TedQL.3. Study 5 reported further validation of the child and parent versions of the TedQL.4. Both children's and parent's TedQLA scores were correlated to their PedsQLTM4.0 scores. No relations between child and parent rated child QOL were found for the PedsQLTM4.0 scores, however children's and parent's TedQL.4 scores were correlated across some of their scores. This thesis has shown the importance of gaining self-reports from children themselves, , and highlighted the best methods to use for such instruments. The applications of our TedQL measure have been discussed in the concluding section

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

Parent–Child Agreement Across Child Health-Related Quality of Life Instruments: a Review of the Literature

Aim: To systematically review the literature published since 1999 on paediatric health-related quality of life (HRQL) in relation to parent–child agreement. Methods: Literature searches used to identify studies which evaluated parent–child agreement for child HRQL measures. Results: Nineteen studies were identified, including four HRQL instruments. The Pediatric Quality of Life Inventory™ (PedsQL™) was most commonly used. Differences in parent–child agreement were noted between domains for different measures. The impact of child and parent characteristics were not consistently considered; however parents of children in a nonclinical sample tended to report higher child HRQL scores than children themselves, while parents of children with health conditions tended to underestimate child HRQL. Conclusion: Despite increasing numbers of studies considering children’s HRQL, information about variables contributing to parent–child agreement levels remains limited. Authors need to consistently provide evidence for reliability and validity of measures, and design studies to systematically investigate variables that impact on levels of parent–child agreement