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      Development of the EQ-5D-Y: a child-friendly version of the EQ-5D

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          There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

          Abstract

          Purpose

          To develop a self-report version of the EQ-5D for younger respondents, named the EQ-5D-Y (Youth); to test its comprehensibility for children and adolescents and to compare results obtained using the standard adult EQ-5D and the EQ-5D-Y.

          Methods

          An international task force revised the content of EQ-5D and wording to ensure relevance and clarity for young respondents. Children’s and adolescents’ understanding of the EQ-5D-Y was tested in cognitive interviews after the instrument was translated into German, Italian, Spanish and Swedish. Differences between the EQ-5D and the EQ-5D-Y regarding frequencies of reported problems were investigated in Germany, Spain and South Africa.

          Results

          The content of the EQ-5D dimensions proved to be appropriate for the measurement of HRQOL in young respondents. The wording of the questionnaire had to be adapted which led to small changes in the meaning of some items and answer options. The adapted EQ-5D-Y was satisfactorily understood by children and adolescents in different countries. It was better accepted and proved more feasible than the EQ-5D. The administration of the EQ-5D and of the EQ-5D-Y causes differences in frequencies of reported problems.

          Conclusions

          The newly developed EQ-5D-Y is a useful tool to measure HRQOL in young people in an age-appropriate manner.

          Related collections

          Most cited references 21

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          EQ-5D: a measure of health status from the EuroQol Group.

          Established in 1987, the EuroQol Group initially comprised a network of international, multilingual and multidisciplinary researchers from seven centres in Finland, the Netherlands, Norway, Sweden and the UK. Nowadays, the Group comprises researchers from Canada, Denmark, Germany, Greece, Japan, New Zealand, Slovenia, Spain, the USA and Zimbabwe. The process of shared development and local experimentation resulted in EQ-5D, a generic measure of health status that provides a simple descriptive profile and a single index value that can be used in the clinical and economic evaluation of health care and in population health surveys. Currently, EQ-5D is being widely used in different countries by clinical researchers in a variety of clinical areas. EQ-5D is also being used by eight out of the first 10 of the top 50 pharmaceutical companies listed in the annual report of Pharma Business (November/December 1999). Furthermore, EQ-5D is one of the handful of measures recommended for use in cost-effectiveness analyses by the Washington Panel on Cost Effectiveness in Health and Medicine. EQ-5D has now been translated into most major languages with the EuroQol Group closely monitoring the process.
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            The PedsQL: measurement model for the pediatric quality of life inventory.

            Pediatric patients' self-report of health-related quality of life (HRQOL) has emerged as an important patient-based health outcome. A practical, validated generic measure of HRQOL facilitates assessing risk, tracking health status, and measuring treatment outcomes in pediatric populations. The PedsQL is a brief, standardized, generic assessment instrument that systematically assesses patients' and parents' perceptions of HRQOL in pediatric patients with chronic health conditions using pediatric cancer as an exemplary model. The PedsQL is based on a modular approach to measuring HRQOL and consists of a 15-item core measure of global HRQOL and eight supplemental modules assessing specific symptom or treatment domains. The PedsQL was empirically derived from data collected from 291 pediatric cancer patients and their parents at various stages of treatment. Both reliability and validity were determined. Cronbach's alpha coefficients for the core measure (alpha = .83 for patient and alpha = .86 for parent) were acceptable for group comparisons. Alphas for the patient self-report modules generally ranged from .70 to .89. Discriminant or clinical validity, using the known-groups approach, was demonstrated for patients on- versus off-treatments. The 11 scales showed small-to-medium positive intercorrelations, supporting the multidimensional measurement model. Further construct validity was demonstrated via a multimethod-multitrait matrix using standardized psychosocial questionnaires. The results support the PedsQL as a reliable and valid measure of HRQOL. The PedsQL core and modular design makes it flexible enough to be used in a variety of research and clinical applications for pediatric chronic health conditions.
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              A review of measures of quality of life for children with chronic illness.

              To identify currently available generic and disease specific measures of quality of life (QoL) for work with children; and make recommendations about the future development and application of QoL measures. Systematic searches were conducted to identify measures of QoL. Primary research papers were coded by the authors on the basis of predefined inclusion and exclusion criteria. Of the 137 papers included in the review, 43 involved the development of a new measure. These included 19 generic and 24 disease specific measures. Almost half the measures were developed in the USA. Measures were identified which were appropriate for children across a broad age range, and included provision for completion by different respondents (child only, parent only, or both). There were no clear distinctions between measures of QoL, health, or functional status. We have identified a small number of measures which fulfil basic requirements and could be used to assess QoL in clinical trials or following interventions. However, there remain a number of problems in measuring QoL in children. These include limited availability of disease specific measures; discrepancies between child and parent ratings; limited availability of measures for self completion by children; lack of precision regarding the content of domains of QoL; and the cultural appropriateness of measures developed elsewhere for children in the UK.
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                Author and article information

                Affiliations
                [1 ]Department of Psychosomatics in Children and Adolescents, Research Unit Child Public Health, University Medical Center Hamburg-Eppendorf, Martinistr. 52, 20246 Hamburg, Germany
                [2 ]Health Economics & Outcomes Research, IMS Health, Doctor Ferran 25-27, 2, 08034 Barcelona, Spain
                [3 ]Department of Prenatal Medicine and Obstetrics (Location Woudenstein, L3-060), Erasmus Medical Centre, Institute of Health Policy & Management, P.O. Box 1738, 3000 DR Rotterdam, The Netherlands
                [4 ]Department of Learning, Informatics, Management and Ethics, Medical Management Centre, Karolinska Institutet, Nobels väg 15a, 171 77 Stockholm, Sweden
                [5 ]Department of Public Health Sciences, Division of Social Medicine, Karolinska Institutet, Nobels väg 15a, 171 77 Stockholm, Sweden
                [6 ]Department of Statistics, University of Bologna, Via delle Belle Arti 41, 40126 Bologna, Italy
                [7 ]Office of Health Economics & Senior Associate, King’s Fund, 12 Whitehall, London, SW1A2DY UK
                [8 ]The Red Cross University College, Box 55676, 102 15 Stockholm, Sweden
                [9 ]Department for Health Economics and Health Care Management, University of Bielefeld, School of Public Health, P.O. Box 10 01 31, 33501 Bielefeld, Germany
                [10 ]University of Extremadura, Faculty of Sport Sciences, Avda Universidad, 10071 Caceres, Spain
                [11 ]CIBER en Epidemiología y Salud Pública (CIBERESP), Barcelona, Spain
                [12 ]Health Services Research Unit, IMIM-Hospital del Mar, Unitat de Recerca en Serveis Sanitaris, Parc de Recerca Biomedica de Barcelona, Doctor Aiguader, 88, 08003 Barcelona, Spain
                [13 ]Division of Physiotherapy, University of Cape Town, School of Health and Rehabilitation Sciences, Anzio Road Observatory, Cape Town, 7925 South Africa
                [14 ]Centre for Health Economics, Alcuin College, University of York, York, YO10 5DD UK
                [15 ]Department of Clinical Medicine and Prevention, Research Centre On Public Health, University of Milano – Bicocca, Villa Serena, Via Pergolesi 33, 20052 Monza, Italy
                Contributors
                +49-40-4280357378 , +49-40-4280355104 , ravens-sieberer@uke.de
                Journal
                Qual Life Res
                Quality of Life Research
                Springer Netherlands (Dordrecht )
                0962-9343
                1573-2649
                20 April 2010
                20 April 2010
                August 2010
                : 19
                : 6
                : 875-886
                2892611
                20405245
                9648
                10.1007/s11136-010-9648-y
                © The Author(s) 2010
                Categories
                Original Paper
                Custom metadata
                © Springer Science+Business Media B.V. 2010

                Public health

                adolescent health, child health, hrqol, measurement, eq-5d

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