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 22

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The Patient-Reported Outcomes Measurement Information System (PROMIS): progress of an NIH Roadmap cooperative group during its first two years.

David Cella, Susan Yount, Nan Rothrock … (2007)

The National Institutes of Health (NIH) Patient-Reported Outcomes Measurement Information System (PROMIS) Roadmap initiative (www.nihpromis.org) is a 5-year cooperative group program of research designed to develop, validate, and standardize item banks to measure patient-reported outcomes (PROs) relevant across common medical conditions. In this article, we will summarize the organization and scientific activity of the PROMIS network during its first 2 years. The network consists of 6 primary research sites (PRSs), a statistical coordinating center (SCC), and NIH research scientists. Governed by a steering committee, the network is organized into functional subcommittees and working groups. In the first year, we created an item library and activated 3 interacting protocols: Domain Mapping, Archival Data Analysis, and Qualitative Item Review (QIR). In the second year, we developed and initiated testing of item banks covering 5 broad domains of self-reported health. The domain mapping process is built on the World Health Organization (WHO) framework of physical, mental, and social health. From this framework, pain, fatigue, emotional distress, physical functioning, social role participation, and global health perceptions were selected for the first wave of testing. Item response theory (IRT)-based analysis of 11 large datasets supplemented and informed item-level qualitative review of nearly 7000 items from available PRO measures in the item library. Items were selected for rewriting or creation with further detailed review before the first round of testing in the general population and target patient populations. The NIH PROMIS network derived a consensus-based framework for self-reported health, systematically reviewed available instruments and datasets that address the initial PROMIS domains. Qualitative item research led to the first wave of network testing which began in the second year.

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The KIDSCREEN-27 quality of life measure for children and adolescents: psychometric results from a cross-cultural survey in 13 European countries.

Ulrike Ravens-Sieberer, Pascal Auquier, Michael Erhart … (2007)

To assess the construct and criterion validity of the KIDSCREEN-27 health-related quality of life (HRQoL) questionnaire, a shorter version of the KIDSCREEN-52. The five-dimensional KIDSCREEN-27 was tested in a sample of 22,827. For criterion validity the correlation with and the percentage explained variance of the scores of the KIDSCREEN-52 instrument were examined. Construct validity was assessed by testing a priori expected associations with other generic HRQoL measures (YQOL-S, PedsQL, CHIP), indicators of physical and mental health, and socioeconomic status. Age and gender differences were investigated. Correlation with corresponding scales of the KIDSCREEN-52 ranged from r = 0.63 to r = 0.96, and r2 ranged from 0.39 to 0.92. Correlations between other HRQoL questionnaires and KIDSCREEN-27 dimensions were moderate to high for those assessing similar constructs (r = 0.36 to 0.63). Statistically significant and sizeable differences between physically and mentally healthy and ill children were found in all KIDSCREEN-27 dimensions together with strong associations with psychosomatic complaints (r = -0.52). Most of the KIDSCREEN-27 dimensions showed a gradient according to socio-economic status, age and gender. The KIDSCREEN-27 seems to be a valid measure of HRQoL in children and adolescents. Further research is needed to assess longitudinal validity and sensitivity to change.

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Translating health status questionnaires and evaluating their quality: the IQOLA Project approach. International Quality of Life Assessment.

M Bullinger, J. Alonso, G Apolone … (1998)

This article describes the methods adopted by the International Quality of Life Assessment (IQOLA) project to translate the SF-36 Health Survey. Translation methods included the production of forward and backward translations, use of difficulty and quality ratings, pilot testing, and cross-cultural comparison of the translation work. Experience to date suggests that the SF-36 can be adapted for use in other countries with relatively minor changes to the content of the form, providing support for the use of these translations in multinational clinical trials and other studies. The most difficult items to translate were physical functioning items, which used examples of activities and distances that are not common outside of the United States; items that used colloquial expressions such as pep or blue; and the social functioning items. Quality ratings were uniformly high across countries. While the IQOLA approach to translation and validation was developed for use with the SF-36, it is applicable to other translation efforts.

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Author and article information

Contributors

Ulrike Ravens-Sieberer: +49-40-741052992 , +49-40-741055105 , ravens-sieberer@uke.de

Michael Herdman: michael.herdman@insightcr.com

Janine Devine: +49-176-38214466 , +49-40-741055105 , j.devine@uke.de

Christiane Otto: +49-40-741056467 , +49-40-741055105 , c.otto@uke.de

Monika Bullinger: +49-40-741052863 , +49-40-741055105 , bullinger@uke.de

Matthias Rose: +49-30-450553002 , +49-30-450553989 , matthias.rose@charite.de

Fionna Klasen: +49-40-7410-57378 , +49-40-7410-55105 , f.klasen@uke.de

Journal

Journal ID (nlm-ta): Qual Life Res

Journal ID (iso-abbrev): Qual Life Res

Title: Quality of Life Research

Publisher: Springer International Publishing (Cham )

ISSN (Print): 0962-9343

ISSN (Electronic): 1573-2649

Publication date (Electronic): 18 May 2013

Publication date PMC-release: 18 May 2013

Publication date (Print): 2014

Volume: 23

Pages: 791-803

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

Article

Publisher ID: 428

DOI: 10.1007/s11136-013-0428-3

PMC ID: 3953538

PubMed ID: 23686556

SO-VID: a15910e9-bcff-44b1-94b1-1fe31d225383

License:

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.

History

Date accepted : 2 May 2013

Custom metadata

ScienceOpen disciplines: Public health

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

Data availability:

ScienceOpen disciplines: Public health

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

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

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Chinese Journal of School Health

Most cited references 22

The Patient-Reported Outcomes Measurement Information System (PROMIS): progress of an NIH Roadmap cooperative group during its first two years.

The KIDSCREEN-27 quality of life measure for children and adolescents: psychometric results from a cross-cultural survey in 13 European countries.

Translating health status questionnaires and evaluating their quality: the IQOLA Project approach. International Quality of Life Assessment.

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