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      Parent–child agreement on health-related quality of life (HRQOL): a longitudinal study

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          Abstract

          Background

          Few studies have evaluated changes on parent–child agreement in HRQOL over time. The objectives of the study were to assess parent–child agreement on child’s HRQOL in a 3-year longitudinal study, and to identify factors associated with possible disagreement.

          Methods

          A sample of Spanish children/adolescents aged 8–18 years and their parents both completed the KIDSCREEN-27 questionnaire. Data on age, gender, family socioeconomic status (SES), and mental health (Strengths and Difficulties Questionnaire, SDQ) was also collected at baseline (2003), and again after 3 years (2006). Changes in family composition were collected at follow-up. Agreement was assessed through intraclass correlation coefficient (ICC), and Bland and Altman plots. Generalizing Estimating Equation (GEE) models were built to analyze factors associated with parent–child disagreement.

          Results

          A total of 418 parent–child pairs were analyzed. At baseline the level of agreement on HRQOL was low to moderate and it was related to the level of HRQOL reported. Physical well-being at baseline showed the highest level of parent–child agreement (ICC=0.59; 0.53-0.65) while less “observable” dimensions presented lower levels of agreement, (i.e. Psychological well-being: ICC= 0.46; 0.38-0.53). Agreement parent–child was lower at follow-up. Some interactions were found between rater and child’s age; with increasing age, child scored lower than parents on Parents relationships and Autonomy (Beta [B] -0.47; -0.71 / -0.23) and the KIDSCREEN-10 (−0.49; -0.73 /-0.25).

          Conclusions

          Parent–child agreement on child’s HRQOL is moderate to low and tends to diminish with children age. Measuring HRQOL of children/adolescents mainly in healthy population samples might require direct self-assessments.

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          Most cited references 34

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          Statistical methods for assessing agreement between two methods of clinical measurement.

          In clinical measurement comparison of a new measurement technique with an established one is often needed to see whether they agree sufficiently for the new to replace the old. Such investigations are often analysed inappropriately, notably by using correlation coefficients. The use of correlation is misleading. An alternative approach, based on graphical techniques and simple calculations, is described, together with the relation between this analysis and the assessment of repeatability.
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            Psychometric properties of the strengths and difficulties questionnaire.

            To describe the psychometric properties of the Strengths and Difficulties Questionnaire (SDQ), a brief measure of the prosocial behavior and psychopathology of 3-16-year-olds that can be completed by parents, teachers, or youths. A nationwide epidemiological sample of 10,438 British 5-15-year-olds obtained SDQs from 96% of parents, 70% of teachers, and 91% of 11-15-year-olds. Blind to the SDQ findings, all subjects were also assigned DSM-IVdiagnoses based on a clinical review of detailed interview measures. The predicted five-factor structure (emotional, conduct, hyperactivity-inattention, peer, prosocial) was confirmed. Internalizing and externalizing scales were relatively "uncontaminated" by one another. Reliability was generally satisfactory, whether judged by internal consistency (mean Cronbach a: .73), cross-informant correlation (mean: 0.34), or retest stability after 4 to 6 months (mean: 0.62). SDQ scores above the 90th percentile predicted a substantially raised probability of independently diagnosed psychiatric disorders (mean odds ratio: 15.7 for parent scales, 15.2 for teacher scales, 6.2 for youth scales). The reliability and validity of the SDQ make it a useful brief measure of the adjustment and psychopathology of children and adolescents.
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              Integrating response shift into health-related quality of life research: a theoretical model.

              Patients confronted with a life-threatening or chronic disease are faced with the necessity to accommodate to their illness. An important mediator of this adaptation process is 'response shift' which involves changing internal standards, values and the conceptualization of quality of life (QOL). Integrating response shift into QOL research would allow a better understanding of how QOL is affected by changes in health status and would direct the development of reliable and valid measures for assessing changes in QOL. A theoretical model is proposed to clarify and predict changes in QOL as a result of the interaction of: (a) a catalyst, referring to changes in the respondent's health status; (b) antecedents, pertaining to stable or dispositional characteristics of the individual (e.g. personality); (c) mechanisms, encompassing behavioral, cognitive, or affective processes to accommodate the changes in health status (e.g. initiating social comparisons, reordering goals); and (d) response shift, defined as changes in the meaning of one's self-evaluation of QOL resulting from changes in internal standards, values, or conceptualization. A dynamic feedback loop aimed at maintaining or improving the perception of QOL is also postulated. This model is illustrated and the underlying assumptions are discussed. Future research directions are outlined that may further the investigation of response shift, by testing specific hypotheses and predictions about the QOL domains and the clinical and psychosocial conditions that would potentiate or prevent response shift effects.
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                Author and article information

                Affiliations
                [1 ]IMIM, Institut Hospital del Mar d’Investigacions Mèdiques, Barcelona, Spain
                [2 ]Agència d'informació, Avaluació i Qualitat en Salut (Agència de Qualitat i Avaluació Sanitàries de Catalunya), Barcelona, Spain
                [3 ]CIBER en Epidemiología y Salud Pública, CIBERESP, Barcelona, Spain
                Contributors
                Journal
                Health Qual Life Outcomes
                Health Qual Life Outcomes
                Health and Quality of Life Outcomes
                BioMed Central
                1477-7525
                2013
                20 June 2013
                : 11
                : 101
                23786901
                3706362
                1477-7525-11-101
                10.1186/1477-7525-11-101
                Copyright ©2013 Rajmil et al.; licensee BioMed Central Ltd.

                This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

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                Research

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