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      Children’s Quality of Life Based on the KIDSCREEN-27: Child Self-Report, Parent Ratings and Child-Parent Agreement in a Swedish Random Population Sample

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          Abstract

          Background

          The KIDSCREEN-27 is a measure of child and adolescent quality of life (QoL), with excellent psychometric properties, available in child-report and parent-rating versions in 38 languages. This study provides child-reported and parent-rated norms for the KIDSCREEN-27 among Swedish 11–16 year-olds, as well as child-parent agreement. Sociodemographic correlates of self-reported wellbeing and parent-rated wellbeing were also measured.

          Methods

          A random population sample consisting of 600 children aged 11–16, 100 per age group and one of their parents (N = 1200), were approached for response to self-reported and parent-rated versions of the KIDSCREEN-27. Parents were also asked about their education, employment status and their own QoL based on the 26-item WHOQOL-Bref. Based on the final sampling pool of 1158 persons, a 34.8% response rate of 403 individuals was obtained, including 175 child-parent pairs, 27 child singleton responders and 26 parent singletons. Gender and age differences for parent ratings and child-reported data were analyzed using t-tests and the Mann-Whitney U-test. Post-hoc Dunn tests were conducted for pairwise comparisons when the p-value for specific subscales was 0.05 or lower. Child-parent agreement was tested item-by-item, using the Prevalence- and Bias-Adjusted Kappa (PABAK) coefficient for ordinal data (PABAK-OS); dimensional and total score agreement was evaluated based on dichotomous cut-offs for lower well-being, using the PABAK and total, continuous scores were evaluated using Bland-Altman plots.

          Results

          Compared to European norms, Swedish children in this sample scored lower on Physical wellbeing (48.8 SE/49.94 EU) but higher on the other KIDSCREEN-27 dimensions: Psychological wellbeing (53.4/49.77), Parent relations and autonomy (55.1/49.99), Social Support and peers (54.1/49.94) and School (55.8/50.01). Older children self-reported lower wellbeing than younger children. No significant self-reported gender differences occurred and parent ratings showed no gender or age differences. Item-by-item child-parent agreement was slight for 14 items (51.9%), fair for 12 items (44.4%), and less than chance for one item (3.7%), but agreement on all dimensions as well as the total score was substantial according to the PABAK-OS. Visual interpretation of the Bland-Altman plot suggested that when children’s average wellbeing score was lower parents seemed to rate their children as having relatively higher total wellbeing, but as children’s average wellbeing score increased, parents tended to rate their children as having relatively lower total wellbeing. Children living with both parents had higher wellbeing than those who lived with only one parent.

          Conclusions

          Results agreed with European findings that adolescent wellbeing decreases with age but contrasted with some prior Swedish research identifying better wellbeing for boys on all dimensions but Social support and peers. The study suggests the importance of considering children’s own reports and not only parental or other informant ratings. Future research should be conducted at regular intervals and encompass larger samples.

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          Most cited references15

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          Measuring agreement in method comparison studies.

          Agreement between two methods of clinical measurement can be quantified using the differences between observations made using the two methods on the same subjects. The 95% limits of agreement, estimated by mean difference +/- 1.96 standard deviation of the differences, provide an interval within which 95% of differences between measurements by the two methods are expected to lie. We describe how graphical methods can be used to investigate the assumptions of the method and we also give confidence intervals. We extend the basic approach to data where there is a relationship between difference and magnitude, both with a simple logarithmic transformation approach and a new, more general, regression approach. We discuss the importance of the repeatability of each method separately and compare an estimate of this to the limits of agreement. We extend the limits of agreement approach to data with repeated measurements, proposing new estimates for equal numbers of replicates by each method on each subject, for unequal numbers of replicates, and for replicated data collected in pairs, where the underlying value of the quantity being measured is changing. Finally, we describe a nonparametric approach to comparing methods.
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            The KIDSCREEN-27 quality of life measure for children and adolescents: psychometric results from a cross-cultural survey in 13 European countries.

            To assess the construct and criterion validity of the KIDSCREEN-27 health-related quality of life (HRQoL) questionnaire, a shorter version of the KIDSCREEN-52. The five-dimensional KIDSCREEN-27 was tested in a sample of 22,827. For criterion validity the correlation with and the percentage explained variance of the scores of the KIDSCREEN-52 instrument were examined. Construct validity was assessed by testing a priori expected associations with other generic HRQoL measures (YQOL-S, PedsQL, CHIP), indicators of physical and mental health, and socioeconomic status. Age and gender differences were investigated. Correlation with corresponding scales of the KIDSCREEN-52 ranged from r = 0.63 to r = 0.96, and r2 ranged from 0.39 to 0.92. Correlations between other HRQoL questionnaires and KIDSCREEN-27 dimensions were moderate to high for those assessing similar constructs (r = 0.36 to 0.63). Statistically significant and sizeable differences between physically and mentally healthy and ill children were found in all KIDSCREEN-27 dimensions together with strong associations with psychosomatic complaints (r = -0.52). Most of the KIDSCREEN-27 dimensions showed a gradient according to socio-economic status, age and gender. The KIDSCREEN-27 seems to be a valid measure of HRQoL in children and adolescents. Further research is needed to assess longitudinal validity and sensitivity to change.
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              Parent-child agreement across child health-related quality of life instruments: a review of the literature.

              To systematically review the literature published since 1999 on paediatric health-related quality of life (HRQL) in relation to parent-child agreement. Literature searches used to identify studies which evaluated parent-child agreement for child HRQL measures. 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. 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.
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                Author and article information

                Contributors
                Role: Editor
                Journal
                PLoS One
                PLoS ONE
                plos
                plosone
                PLoS ONE
                Public Library of Science (San Francisco, CA USA )
                1932-6203
                9 March 2016
                2016
                : 11
                : 3
                : e0150545
                Affiliations
                [1 ]Department of Clinical Neuroscience, Center for Psychiatric Research, Karolinska Institutet, Stockholm, Sweden
                [2 ]Department of Psychology, Uppsala University, Uppsala, Sweden
                [3 ]Department of Public Health Sciences, Karolinska Institutet, Stockholm, Sweden
                University of Bath, UNITED KINGDOM
                Author notes

                Competing Interests: The authors have declared that no competing interests exist.

                Conceived and designed the experiments: AHB SU KE. Performed the experiments: IJ AHB. Analyzed the data: BL AHB KE. Contributed reagents/materials/analysis tools: BL. Wrote the paper: AHB IJ BL KE. Applied for and obtained funding from the Söderström-Königska Foundation and the Mayflower Charity Foundation for Children: AHB SU.

                [¤a]

                Current address: Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm, Sweden

                [¤b]

                Current address: Department of Investigation, The Swedish Police, Stockholm, Sweden

                [¤c]

                Current address: Tellas Consulting AB, Malmö, Sweden

                Article
                PONE-D-15-36550
                10.1371/journal.pone.0150545
                4784934
                26959992
                94c41c59-bc53-4de7-83dd-2bf5e79701b7
                © 2016 Berman et al

                This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited.

                History
                : 20 August 2015
                : 15 February 2016
                Page count
                Figures: 1, Tables: 7, Pages: 15
                Funding
                Data collection was funded by the Söderström-Königska Foundation. Data analysis was funded via a stipend to author BL from the Mayflower Charity Foundation for Children. Authors AHB and SU’s contributions were partly supported by grant no. 241988 for the FP7 COPING project (Children of Prisoners, Interventions & Mitigations to Strengthen Mental Health). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
                Categories
                Research Article
                People and Places
                Population Groupings
                Age Groups
                Children
                People and Places
                Population Groupings
                Families
                Children
                Medicine and Health Sciences
                Mental Health and Psychiatry
                People and Places
                Population Groupings
                Age Groups
                Adolescents
                Research and Analysis Methods
                Research Design
                Survey Research
                Questionnaires
                Medicine and Health Sciences
                Health Care
                Quality of Life
                Social Sciences
                Sociology
                Education
                Schools
                Biology and Life Sciences
                Psychology
                Psychometrics
                Social Sciences
                Psychology
                Psychometrics
                People and Places
                Population Groupings
                Age Groups
                Custom metadata
                The data file for the article with supporting documents are available from the Ann Arbor, MI: Inter-university Consortium for Political and Social Research ( ICPSR.org) [distributor], 2016-01-27. http://doi.org/10.3886/E56046V1.

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