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      How to assess quality of life in child and adolescent psychiatry Translated title: ¿Cómo evaluar la calidad de vida en psiquiatría infantil y del adolescente? Translated title: Comment évaluer la qualité de vie des enfants et des adolescents en psychiatrie?

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          Abstract

          This article provides an overview of the conceptual foundations of measuring health-related quality of life (HRQoL) in children and adolescents in child and adolescent psychiatry, and of the current state of research in this field. The available procedures for determining quality of life are presented according to their areas of use and their psychometric characteristics. The internationally available generic instruments for measuring HRQoL in children are identified and assessed in terms of their strengths and weaknesses with regard to selected criteria. As a result, seven generic HRQoL instruments and two utility procedures have been identified which satísfy the following criteria: (i) psychometric qualíty; (ii) age-appropriate measurement; (iii) versions for self-reporting and external rating; and (iv) cross-cultural measurement. The identified instruments satisfy the individual criteria to different degrees. They are increasingly being used in health services research, treatment studies, and epidemiological research; however, they are not yet widely used as part of the clinical routine in child and adolescent psychiatrics.

          Translated abstract

          Este artículo proporciona una panorámica de los fundamentos conceptuales de la medición de la calidad de vida relacionada con la salud (CdVRS) en psiquiatría de niños y adolescentes, y del estado actual de la investigación en este campo. Los procedimientos disponibles para determinar la calidad de vida se presentan de acuerdo con sus áreas de utílización y sus características psicométricas. Se identificaron y evaluaron los instrumentos generales disponibles a nivel internacíonal para medir la CdVRS en niños según sus fortalezas y debilidades en relacíon con los criterios de selección. Como resultado se identificaron siete instrumentos generales para CdVRS y dos procedimientos útiles que cumplíeron con los siguientes criterios: 1) calidad psicométrica, 2) medición apropiada para la edad, 3) versiones para auto-reporte y medición externa, y 4) medición transcultural. Los instrumentos identíficados cumplieron los criterios individuales en grados diversos. Ellos se están empleando cada vez más en investigación de servicios de salud, estudios terapéuticos e investígación epidemiológical; sin embargo, todavía ellos no son muy usados como parte de la rutina clínica en psiquiatría de niños y adolescentes.

          Translated abstract

          Cet article présente une synthèse des concepts de base de la mesure de la qualité de vie (QdV) chez les enfants et les adolescents en psychiatrie et de l'état actuel de la recherche dans ce domaine. Les tests de mesure de la QdV disponibles sont présentés d'après leur champ d'utilisation et leurs caractéristiques psychométriques. Les outils génériques internationaux de mesure de la QdV pour les enfants sont identifiés et évalués en termes de force et de faiblesse d'après les critères sélectionnés. Sept outils génériques de la QdV et deux méthodes sont ainsi répertoriés, satisfaisant aux critères suivants: 1) qualité psychométrique 2) mesure adaptée à l'âge 3) versions d'auto- et d'héréto-évaluation 4) mesure interculturelle. Ces outils répondent à des degrés divers aux critères individuels. Ils sont de plus en plus utilisés dans la recherche de Santé publique, les études thérapeutiques et la recherche épidémiologique mais restent cependant encore sous-employés en routine clinique chez l'enfant et l'adolescent en psychiatrie.

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          Most cited references55

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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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            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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              Feasibility, reliability, and validity of the EQ-5D-Y: results from a multinational study

              Purpose To examine the feasibility, reliability, and validity of the newly developed EQ-5D-Y. Methods The EQ-5D-Y was administered in population samples of children and adolescents in Germany, Italy, South Africa, Spain, and Sweden. Percentages of missing values and reported problems were calculated. Test–retest reliability was determined. Spearman’s rank correlation coefficients with other generic measures of HRQOL were calculated. Known groups’ validity was examined by comparing groups with a priori expected differences in HRQOL. Results Between 91 and 100% of the respondents provided valid scorings. Sweden had the lowest proportion of reported problems (1–24.9% across EQ-5D-Y dimensions), with the highest proportions in South Africa (2.8–47.3%) and Italy (4.3–39.0%). Percentages of agreement in test–retest reliability ranged between 69.8 and 99.7% in the EQ-5D-Y dimensions; Kappa coefficients were up to 0.67. Correlation coefficients with other measures of self-rated health indicated convergent validity (up to r = −0.56). Differences between groups classified according to presence of chronic conditions, self-rated overall health and psychological problems provided preliminary evidence of known groups’ validity. Conclusions Results provide preliminary evidence of the instrument’s feasibility, reliability and validity. Further study is required in clinical samples and for possible future applications in economic analyses.
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                Author and article information

                Contributors
                Journal
                Dialogues Clin Neurosci
                Dialogues Clin Neurosci
                Dialogues Clin Neurosci
                Dialogues in Clinical Neuroscience
                Les Laboratoires Servier (France )
                1294-8322
                1958-5969
                June 2014
                June 2014
                : 16
                : 2
                : 147-158
                Affiliations
                Child Public Health Research Unit, Department of Child and Adolescent Psychiatry, Psychotherapy, and Psychosomatics, University Medical Centre Hamburg-Eppendorf, Hamburg, Germany
                Psychiatric Clinic, University Medical Centre Hamburg-Eppendorf, Hamburg, Germany
                Child Public Health Research Unit, Department of Child and Adolescent Psychiatry, Psychotherapy, and Psychosomatics, University Medical Centre Hamburg-Eppendorf, Hamburg, Germany
                Child Public Health Research Unit, Department of Child and Adolescent Psychiatry, Psychotherapy, and Psychosomatics, University Medical Centre Hamburg-Eppendorf, Hamburg, Germany
                Author notes
                Article
                10.31887/DCNS.2014.16.2/usieberer
                4140509
                25152654
                bc0ca599-c9fa-431b-92a9-5c2f2fddfd54
                Copyright: © 2014 Institut la Conférence Hippocrate - Servier Research Group

                This is an open-access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by-nc-nd/3.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                Categories
                Clinical Research

                Neurosciences
                quality of life,child,adolescent,(generic) instrument
                Neurosciences
                quality of life, child, adolescent, (generic) instrument

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