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      The European KIDSCREEN approach to measure quality of life and well-being in children: development, current application, and future advances

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          Abstract

          Purpose

          The KIDSCREEN questionnaires were developed by a collaborative effort of European pediatric researchers for use in epidemiologic public health surveys, clinical intervention studies, and research projects. The article gives an overview of the development of the tool, summarizes its extensive applications in Europe, and describes the development of a new computerized adaptive test (KIDS-CAT) based on KIDSCREEN experiences.

          Methods

          The KIDSCREEN versions (self-report and proxy versions with 52, 27, and 10 items) were simultaneously developed in 13 different European countries to warrant cross-cultural applicability, using methods based on classical test theory (CTT: descriptive statistics, CFA and MAP, internal consistency, retest reliability measures) and item response theory (IRT: Rasch modeling, DIF analyses, etc.). The KIDS-CAT was developed (in cooperation with the US pediatric PROMIS project) based on archival data of European KIDSCREEN health surveys using IRT more extensively (IRC).

          Results

          Research has shown that the KIDSCREEN is a reliable, valid, sensitive, and conceptually/linguistically appropriate QoL measure in 38 countries/languages by now. European and national norm data are available. New insights from KIDSCREEN studies stimulate pediatric health care. Based on KIDSCREEN, the Kids-CAT promises to facilitate a very efficient, precise, as well as reliable and valid assessment of QoL.

          Conclusions

          The KIDSCREEN has standardized QoL measurement in Europe in children as a valid and cross-cultural comparable tool. The Kids-CAT has the potential to further advance pediatric health measurement and care via Internet application.

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          Most cited references 38

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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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            The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005-2008.

            Patient-reported outcomes (PROs) are essential when evaluating many new treatments in health care; yet, current measures have been limited by a lack of precision, standardization, and comparability of scores across studies and diseases. The Patient-Reported Outcomes Measurement Information System (PROMIS) provides item banks that offer the potential for efficient (minimizes item number without compromising reliability), flexible (enables optional use of interchangeable items), and precise (has minimal error in estimate) measurement of commonly studied PROs. We report results from the first large-scale testing of PROMIS items. Fourteen item pools were tested in the U.S. general population and clinical groups using an online panel and clinic recruitment. A scale-setting subsample was created reflecting demographics proportional to the 2000 U.S. census. Using item-response theory (graded response model), 11 item banks were calibrated on a sample of 21,133, measuring components of self-reported physical, mental, and social health, along with a 10-item Global Health Scale. Short forms from each bank were developed and compared with the overall bank and with other well-validated and widely accepted ("legacy") measures. All item banks demonstrated good reliability across most of the score distributions. Construct validity was supported by moderate to strong correlations with legacy measures. PROMIS item banks and their short forms provide evidence that they are reliable and precise measures of generic symptoms and functional reports comparable to legacy instruments. Further testing will continue to validate and test PROMIS items and banks in diverse clinical populations. Copyright © 2010 Elsevier Inc. All rights reserved.
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              Study protocol for the World Health Organization project to develop a Quality of Life assessment instrument (WHOQOL).

                (1993)
              The World Health Organization (WHO) has undertaken a project to develop an instrument (the WHOQOL) for measuring quality of life. Quality of life is defined as an individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. It is a broad ranging concept affected in a complex way by the person's physical health, psychological state, level of independence, social relationships, and their relationship to salient features of their environment. The instrument will be developed in the framework of a collaborative project involving numerous centres in different cultural settings. In addition, it will have proven psychometric properties of validity, responsiveness and reliability and will be sensitive to the cultural setting in which it is applied, whilst maintaining comparability of scores across different cultural settings. This paper outlines the characteristics of the planned instrument and the study protocol governing work on its development. To date steps 1 through 5 have been completed and work is progressing on step 6. It is anticipated that the instrument will be available for piloting in July 1993 and a final version available for use in June 1994.
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                Author and article information

                Affiliations
                [ ]Department of Child and Adolescent Psychiatry, Psychotherapy, and Psychosomatics, University Medical Center Hamburg-Eppendorf, Martinistr. 52 (W29), 20246 Hamburg, Germany
                [ ]Insight Consulting and Research, Cami Ral 266, 08301 Mataro, Barcelona Spain
                [ ]Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Martinistr. 52, 20246 Hamburg, Germany
                [ ]Department for Internal Medicine and Psychosomatics, Charité, University Medicine, Berlin, Luisenstraße 13, 10117 Berlin, Germany
                Contributors
                +49-40-741052992 , +49-40-741055105 , ravens-sieberer@uke.de
                michael.herdman@insightcr.com
                +49-176-38214466 , +49-40-741055105 , j.devine@uke.de
                +49-40-741056467 , +49-40-741055105 , c.otto@uke.de
                +49-40-741052863 , +49-40-741055105 , bullinger@uke.de
                +49-30-450553002 , +49-30-450553989 , matthias.rose@charite.de
                +49-40-7410-57378 , +49-40-7410-55105 , f.klasen@uke.de
                Journal
                Qual Life Res
                Qual Life Res
                Quality of Life Research
                Springer International Publishing (Cham )
                0962-9343
                1573-2649
                18 May 2013
                18 May 2013
                2014
                : 23
                : 791-803
                23686556 3953538 428 10.1007/s11136-013-0428-3
                © The Author(s) 2013

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution License which permits any use, distribution, and reproduction in any medium, provided the original author(s) and the source are credited.

                Categories
                Pediatric QOL Special Section
                Custom metadata
                © Springer International Publishing Switzerland 2014

                Public health

                quality of life, children, adolescents, kidscreen, generic measurement

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