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

Ulrike Ravens-Sieberer, Michael Herdman, Janine Devine, Christiane Otto, Monika Bullinger, Matthias Rose, Fionna Klasen, Ulrike Ravens-Sieberer, Michael Herdman, Janine Devine, Christiane Otto, Monika Bullinger, Matthias Rose, Fionna Klasen

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.

Figures

Fig. 1
Fig. 1
Flowchart showing development process of the KIDSCREEN tool
Fig. 2
Fig. 2
Dimension of the KIDSCREEN instruments and relationship between versions

References

    1. Solans M, Pane S, Estrada M-D, Serra-Sutton V, Berra S, Herdman M, et al. Health-related quality of life measurement in children and adolescents: A systematic review of generic and disease-specific instruments. Value in Health. 2008;11(4):742–764. doi: 10.1111/j.1524-4733.2007.00293.x.
    1. Matza LS, Swensen AR, Flood EM, Secnik K, Leidy NK. Assessment of health-related quality of life in children: a review of conceptual, methodological, and regulatory issues. Value in Health. 2004;7(1):79–92. doi: 10.1111/j.1524-4733.2004.71273.x.
    1. World Health Organization—Division of Mental Health . Measurement of quality of life in children. MNH/PSF/94.5. Geneva: World Health Organization; 1994.
    1. Bullinger M, Schmidt S, Petersen C. Assessing quality of life of children with chronic health conditions and disabilities: A European approach. International Journal of Rehabilitation Research. 2002;25(3):197–206. doi: 10.1097/00004356-200209000-00005.
    1. KIDSCREEN Group . The KIDSCREEN questionnaires—Quality of life questionnaires for children and adolescents—Handbook. Lengerich: Papst Science Publisher; 2006.
    1. Ravens-Sieberer U, Gosch A, Rajmil L, Erhart M, Bruil J, Duer W, et al. KIDSCREEN-52 quality-of-life measure for children and adolescents. Expert Review of Pharmacoeconomics & Outcomes Research. 2005;5(3):353–364. doi: 10.1586/14737167.5.3.353.
    1. Ravens-Sieberer U, Gosch A, Rajmil L, Erhart M, Bruil J, Power M, et al. The KIDSCREEN-52 quality of life measure for children and adolescents: Psychometric results from a cross-cultural survey in 13 European countries. Value in Health. 2008;11(4):645–658. doi: 10.1111/j.1524-4733.2007.00291.x.
    1. Ravens-Sieberer U, Auquier P, Erhart M, Gosch A, Rajmil L, Bruil J, et al. The KIDSCREEN-27 quality of life measure for children and adolescents: Psychometric results from a cross-cultural survey in 13 European countries. Quality of Life Research. 2007;16(8):1347–1356. doi: 10.1007/s11136-007-9240-2.
    1. Robitail S, Ravens-Sieberer U, Simeoni MC, Rajmil L, Bruil J, Power M, et al. Testing the structural and cross-cultural validity of the KIDSCREEN-27 quality of life questionnaire. Quality of Life Research. 2007;16(8):1335–1345. doi: 10.1007/s11136-007-9241-1.
    1. Ravens-Sieberer U, Erhart M, Rajmil L, Herdman M, Auquier P, Bruil J, et al. Reliability, construct and criterion validity of the KIDSCREEN-10 score: A short measure for children and adolescents’ well-being and health-related quality of life. Quality of Life Research. 2010;19(10):1487–1500. doi: 10.1007/s11136-010-9706-5.
    1. Herdman M, Rajmil L, Ravens-Sieberer U, Bullinger M, Power M, Alonso J, et al. Expert consensus in the development of a European health-related quality of life measure for children and adolescents: A Delphi study. Acta Paediatrica. 2002;91(12):1385–1390. doi: 10.1111/j.1651-2227.2002.tb02838.x.
    1. Detmar SB, Bruil J, Ravens-Sieberer U, Gosch A, Bisegger C. The use of focus groups in the development of the KIDSCREEN HRQL questionnaire. Quality of Life Research. 2006;15(8):1345–1353. doi: 10.1007/s11136-006-0022-z.
    1. Robitail S, Simeoni MC, Erhart M, Ravens-Sieberer U, Bruil J, Auquier P. Validation of the European proxy KIDSCREEN-52 pilot test health-related quality of life questionnaire: First results. The Journal of Adolescent Health. 2006;39(4):596.e1–596.e10. doi: 10.1016/j.jadohealth.2006.01.009.
    1. Berra S, Ravens-Sieberer U, Erhart M, Tebe C, Bisegger C, Duer W, et al. Methods and representativeness of a European survey in children and adolescents: The KIDSCREEN study. BMC Public Health. 2007;7:182. doi: 10.1186/1471-2458-7-182.
    1. Varni JW, Seid M, Rode CA. The PedsQL: Measurement model for the pediatric quality of life inventory. Medical Care. 1999;37(2):126–139. doi: 10.1097/00005650-199902000-00003.
    1. Starfield, B., Riley, A., Ensminger, M., Green, B., Ryan, S., Kim-Harris, S., et al. (1994/1997/2000). Manual for the Child Health and Illness Profile-Adolescent Edition (CHIP-AETM). Baltimore, MD: The Johns Hopkins University.
    1. Patrick DL, Edwards TC, Topolski TD. Adolescent quality of life, part II: Initial validation of a new instrument. Journal of Adolescence. 2002;25(3):287–300. doi: 10.1006/jado.2002.0471.
    1. Palacio-Vieira JA, Villalonga-Olives E, Valderas JM, Espallargues M, Herdman M, Berra S, et al. Changes in health-related quality of life (HRQoL) in a population-based sample of children and adolescents after 3 years of follow-up. Quality of Life Research. 2008;17(10):1207–1215. doi: 10.1007/s11136-008-9405-7.
    1. Rajmil L, Palacio-Vieira JA, Herdman M, Lopez-Aguila S, Villalonga-Olives E, Valderas JM, et al. Effect on health-related quality of life of changes in mental health in children and adolescents. Health & Quality of Life Outcomes. 2009;7:103. doi: 10.1186/1477-7525-7-103.
    1. Klasen, F., Barkmann, C., Wille, N., Hölling, H., Schulte-Markwort, M., Ravens-Sieberer, U., et al. (2013). Cohort profile: The longitudinal study of the behaviour and wellbeing of children and adolescents in Germany (The BELLA study). Manuscript submitted for publication.
    1. Embretson SE, Reise SP. Item response theory for psychologists. Mahwah: Lawrence Erlbaum Associates; 2000.
    1. Zumbo BD. A handbook on theory and methods of differential item functioning. Ottawa: National Defense Headquarters; 1999.
    1. Bolt D, Stout W. Differential item functioning: Its multidimensional model and resulting SIBTEST detection procedure. Behaviormetrika. 1996;23:67–95. doi: 10.2333/bhmk.23.67.
    1. von Rueden U, Gosch A, Rajmil L, Bisegger C, Ravens-Sieberer U. Socioeconomic determinants of health related quality of life in childhood and adolescence: Results from a European study. Journal of Epidemiology and Community Health. 2006;60(2):130–135. doi: 10.1136/jech.2005.039792.
    1. WHOQOL Group Study protocol for the World Health Organisation project to develop a quality of life assessment instrument (WHOQOL) Quality of Life Research. 1993;2:153–159. doi: 10.1007/BF00435734.
    1. Bullinger M, Alonso J, Apolone G, Leplege A, Sullivan M, Wood-Dauphinee S, et al. Translating health status questionnaires and evaluating their quality: The IQOLA Project approach. International Quality of Life Assessment. Journal of Clinical Epidemiology. 1998;51(11):913–923. doi: 10.1016/S0895-4356(98)00082-1.
    1. Roberts, C., Freeman, J., Schnohr, C. W., Looze, M. E., Nic Gabhainn, S., Rasmussen, M., et al. (2009). The health behaviour in school-aged children (HBSC) study: Methodological developments and current tensions. International Journal of Public Health,54(Suppl. 2), 140–150. doi:10.1007/s00038-009-5405-9.
    1. Currie, C., Nic Gabhainn, S., & Godeau, E. (2009). The health behaviour in school-aged children: WHO collaborative cross-national (HBSC) study: Origins, concept, history and development 1982–2008. International Journal of Public Health,54(Suppl. 2), 131–139. doi:10.1007/s00038-009-5404-x.
    1. Erhart M, Ottova V, Gaspar T, Jericek H, Schnohr C, Alikasifoglu M, et al. Measuring mental health and well-being of school-children in 15 European countries using the KIDSCREEN-10 Index. International Journal of Public Health. 2009;54(Suppl. 2):160–166. doi: 10.1007/s00038-009-5407-7.
    1. Gallup Oragnization. (2009). Parents’ views on the mental health of their child. Analytical report. Flash EB Series #246.
    1. Dickinson HO, Parkinson KN, Ravens-Sieberer U, Schirripa G, Thyen U, Arnaud C, et al. Self-reported quality of life of 8–12-year-old children with cerebral palsy: A cross-sectional European study. Lancet. 2007;369(9580):2171–2178. doi: 10.1016/S0140-6736(07)61013-7.
    1. Erhart M, Ravens-Sieberer U, Dickinson HO, Colver A. Rasch measurement properties of the KIDSCREEN quality of life instrument in children with cerebral palsy and differential item functioning between children with and without cerebral palsy. Value in Health. 2009;12(5):782–792. doi: 10.1111/j.1524-4733.2009.00508.x.
    1. Lohr KN, Zebrack BJ. Using patient-reported outcomes in clinical practice: Challenges and opportunities. Quality of Life Research. 2009;18(1):99–107. doi: 10.1007/s11136-008-9413-7.
    1. Varni JW, Burwinkle TM, Lane MM. Health-related quality of life measurement in pediatric clinical practice: An appraisal and precept for future research and application. Health & Quality of Life Outcomes. 2005;3:34. doi: 10.1186/1477-7525-3-34.
    1. Wainer H, Dorans N, Flaugher R. Computerized adaptive testing: A primer. Hillsdale, NJ: Lawrence Erlbaum Associates; 2000.
    1. Fliege H, Becker J, Walter OB, Bjorner JB, Klapp BF, Rose M. Development of a computer-adaptive test for depression (D-CAT) Quality of Life Research. 2005;14(10):2277–2291. doi: 10.1007/s11136-005-6651-9.
    1. Rose M, Bjorner JB, Becker J, Fries JF, Ware JE. Evaluation of a preliminary physical function item bank supported the expected advantages of the Patient-Reported Outcomes Measurement Information System (PROMIS). [Evaluation Studies Research Support, N.I.H., Extramural Research Support, Non-U.S. Gov’t] Journal of Clinical Epidemiology. 2008;61(1):17–33. doi: 10.1016/j.jclinepi.2006.06.025.
    1. Cella D, Riley W, Stone A, Rothrock N, Reeve B, Yount S, et al. The Patient-Reported Outcomes Measurement Information System (PROMIS) developed and tested its first wave of adult self-reported health outcome item banks: 2005–2008. Journal of Clinical Epidemiology. 2010;63(11):1179–1194. doi: 10.1016/j.jclinepi.2010.04.011.
    1. Cella D, Yount S, Rothrock N, Gershon R, Cook K, Reeve B, et al. The Patient-Reported Outcomes Measurement Information System (PROMIS): Progress of an NIH Roadmap cooperative group during its first two years. Medical Care. 2007;45(5 Suppl 1):3–11. doi: 10.1097/01.mlr.0000258615.42478.55.
    1. Landgraf JM, Maunsell E, Speechley KN, Bullinger M, Campbell S, Abetz L, et al. Canadian-French, German and UK versions of the Child Health Questionnaire: Methodology and preliminary item scaling results. Quality of Life Research. 1998;7(5):433–445. doi: 10.1023/A:1008810004694.
    1. Wille N, Badia X, Bonsel G, Burstrom K, Cavrini G, Devlin N, et al. Development of the EQ-5D-Y: A child-friendly version of the EQ-5D. Quality of Life Research. 2010;19(6):875–886. doi: 10.1007/s11136-010-9648-y.
    1. Varni J, Limbers C, Neighbors K, Schulz K, Lieu J, Heffer R, et al. The PedsQL™ Infant Scales: Feasibility, internal consistency reliability, and validity in healthy and ill infants. Quality of Life Research. 2011;20(1):45–55. doi: 10.1007/s11136-010-9730-5.

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