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      Comparing measurement properties of EQ-5D-Y-3L and EQ-5D-Y-5L in paediatric patients

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          Abstract

          Background

          The adult versions EQ-5D-3L and EQ-5D-5L have been extensive compared. This is not the case for the EQ-5D youth versions. The study aim was to compare the measurement properties and responsiveness of EQ-5D-Y-3L and EQ-5D-Y-5L in paediatric patients.

          Methods

          A sample of patients 8–16 years old with different diseases and a wide range of disease severity was asked to complete EQ-5D-Y-3L, EQ-5D-Y-5L, PedsQL Generic Core Scale, and selected, appropriate disease-specific instruments, three times. EQ-5D-Y-3L and EQ-5D-Y-5L were compared in terms of: feasibility, (re-)distribution properties, discriminatory power, convergent validity, test–retest reliability, and responsiveness.

          Results

          286 participating patients suffered from one of the following diseases: major beta-thalassemia, haemophilia, acute lymphoblastic leukaemia, acute illness. Missing responses were comparable between versions of the EQ-5D-Y, suggesting comparable feasibility. The number of patients in the best health state (level profile 11111) was equal in both EQ-5D-Y versions. The projection of EQ-5D-Y-3L scores onto EQ-5D-Y-5L for all dimensions showed that the two additional levels in EQ-5D-Y-5L slightly improved the accuracy of patients in reporting their problems, especially if severe. Convergent validity with PedsQL and disease-specific measures showed that the two EQ-5D-Y versions performed about equally. Test–retest reliability (EQ-5D-Y-3L 0.78 vs EQ-5D-Y-5L 0.84), and sensitivity for detecting health changes, were both better in EQ-5D-Y-5L.

          Conclusions

          Extending the number of levels did not give clear superiority to EQ-5D-Y-5L over EQ-5D-Y-3L based on the criteria assessed in this study. However, increasing the number of levels benefitted EQ-5D-Y performance in the measurement of moderate to severe problems and especially in longitudinal study designs.

          Supplementary Information

          The online version contains supplementary material available at 10.1186/s12955-021-01889-4.

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          Most cited references39

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          Development and preliminary testing of the new five-level version of EQ-5D (EQ-5D-5L)

          Purpose This article introduces the new 5-level EQ-5D (EQ-5D-5L) health status measure. Methods EQ-5D currently measures health using three levels of severity in five dimensions. A EuroQol Group task force was established to find ways of improving the instrument’s sensitivity and reducing ceiling effects by increasing the number of severity levels. The study was performed in the United Kingdom and Spain. Severity labels for 5 levels in each dimension were identified using response scaling. Focus groups were used to investigate the face and content validity of the new versions, including hypothetical health states generated from those versions. Results Selecting labels at approximately the 25th, 50th, and 75th centiles produced two alternative 5-level versions. Focus group work showed a slight preference for the wording ‘slight-moderate-severe’ problems, with anchors of ‘no problems’ and ‘unable to do’ in the EQ-5D functional dimensions. Similar wording was used in the Pain/Discomfort and Anxiety/Depression dimensions. Hypothetical health states were well understood though participants stressed the need for the internal coherence of health states. Conclusions A 5-level version of the EQ-5D has been developed by the EuroQol Group. Further testing is required to determine whether the new version improves sensitivity and reduces ceiling effects.
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            EuroQol: the current state of play.

            R. Brooks (1996)
            The EuroQol Group first met in 1987 to test the feasibility of jointly developing a standardised non-disease-specific instrument for describing and valuing health-related quality of life. From the outset the Group has been multi-country, multi-centre, and multi-disciplinary. The EuroQol instrument is intended to complement other forms of quality of life measures, and it has been purposefully developed to generate a cardinal index of health, thus giving it considerable potential for use in economic evaluation. Considerable effort has been invested by the Group in the development and valuation aspects of health status measurement. Earlier work was reported upon in 1990; this paper is a second 'corporate' effort detailing subsequent developments. The concepts underlying the EuroQol framework are explored with particular reference to the generic nature of the instrument. The valuation task is reviewed and some evidence on the methodological requirements for measurement is presented. A number of special issues of considerable interest and concern to the Group are discussed: the modelling of data, the duration of health states and the problems surrounding the state 'dead'. An outline of some of the applications of the EuroQol instrument is presented and a brief commentary on the Group's ongoing programme of work concludes the paper.
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              Measurement of health status. Ascertaining the minimal clinically important difference.

              In recent years quality of life instruments have been featured as primary outcomes in many randomized trials. One of the challenges facing the investigator using such measures is determining the significance of any differences observed, and communicating that significance to clinicians who will be applying the trial results. We have developed an approach to elucidating the significance of changes in score in quality of life instruments by comparing them to global ratings of change. Using this approach we have established a plausible range within which the minimal clinically important difference (MCID) falls. In three studies in which instruments measuring dyspnea, fatigue, and emotional function in patients with chronic heart and lung disease were applied the MCID was represented by mean change in score of approximately 0.5 per item, when responses were presented on a seven point Likert scale. Furthermore, we have established ranges for changes in questionnaire scores that correspond to moderate and large changes in the domains of interest. This information will be useful in interpreting questionnaire scores, both in individuals and in groups of patients participating in controlled trials, and in the planning of new trials.
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                Author and article information

                Contributors
                t.fitriana@erasmusmc.nl , titi.sahidah@yarsi.ac.id
                Journal
                Health Qual Life Outcomes
                Health Qual Life Outcomes
                Health and Quality of Life Outcomes
                BioMed Central (London )
                1477-7525
                15 November 2021
                15 November 2021
                2021
                : 19
                : 256
                Affiliations
                [1 ]GRID grid.5645.2, ISNI 000000040459992X, Department of Psychiatry, Section Medical Psychology and Psychotherapy, , Erasmus MC University Medical Center, ; Wytemaweg 80, 3015 CN Rotterdam, The Netherlands
                [2 ]GRID grid.443430.4, ISNI 0000 0004 0418 0029, Faculty of Psychology, , YARSI University, ; Jakarta, Indonesia
                [3 ]GRID grid.11553.33, ISNI 0000 0004 1796 1481, Department of Developmental Psychology, Faculty of Psychology, , Universitas Padjadjaran, ; Jatinangor, Indonesia
                [4 ]GRID grid.487294.4, Department of Child Health, , Cipto Mangunkusumo Hospital, ; Jakarta, Indonesia
                [5 ]GRID grid.452407.0, ISNI 0000 0004 0512 9612, Department of Child Health, Faculty of Medicine, , Universitas Padjadjaran/Dr. Hasan Sadikin Hospital, ; Bandung, Indonesia
                [6 ]GRID grid.478988.2, ISNI 0000 0004 5906 3508, The EuroQol Research Foundation, ; Rotterdam, The Netherlands
                [7 ]GRID grid.5645.2, ISNI 000000040459992X, Department of Public Health, , Erasmus MC University Medical Center, ; Dr. Molewaterplein 40, 3015 GD Rotterdam, The Netherlands
                Author information
                http://orcid.org/0000-0001-5062-6886
                Article
                1889
                10.1186/s12955-021-01889-4
                8591892
                34781978
                9bd20ee2-153f-4b3c-9177-519c8c3e5d77
                © The Author(s) 2021

                Open AccessThis article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

                History
                : 9 April 2021
                : 27 October 2021
                Funding
                Funded by: FundRef http://dx.doi.org/10.13039/501100006419, EuroQol Research Foundation;
                Award ID: 20180140
                Award Recipient :
                Funded by: Indonesian Endowment Fund for Education (LPDP)
                Categories
                Research
                Custom metadata
                © The Author(s) 2021

                Health & Social care
                eq-5d-y-5l,eq-5d-y-3l paediatric patients,psychometrics,health-related quality of life

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