Abstract
Objectives The aim of this study was to shorten the Health-Related Quality of Life (HRQL) DISABKIDS Chronic Generic Measure (DCGM) for children and adolescents and to test its reliability, construct, and external validity. Study design 1153 children and adolescents (8–16 years) with chronic health conditions (asthma, arthritis, epilepsy, cerebral palsy, diabetes, atopic dermatitis, cystic fibrosis) and their family were recruited from different paediatric clinical settings in seven European countries. A two-time assessment comprised reports on sociodemographics, health status and HRQL of children/adolescents. Results The 37-item DCGM describes six dimensions (Independence, Physical Limitation, Emotion, Social Inclusion, Social Exclusion and Treatment) confirmed by Confirmatory Factor Analysis, multi-item scaling and item-goodness of fit to Rasch model. Internal consistency (Cronbach’s alpha: 0.70–0.87) and test-retest reliability (ICC: 0.71–0.83) were satisfactory. Correlations between DCGM-37 and other HRQL instruments were the highest between dimensions evaluating similar concepts. Regarding discriminant validity of the DCGM-37, girls and older adolescents reported lower emotional we ll-being. Children belonging to families with low level of affluence and those with severe health conditions were found to have worse HRQL in all domains. Conculsion Reliability, construct validity as well as convergent and discriminant validity of the DCGM-37 were shown.
Similar content being viewed by others
References
Eiser, C., & Morse, R. (2001). A review of measures of quality of life for children with chronic illnesses. Archieves of Disease in Childhood, 84, 205–211.
Eiser, C., & Morse, R. (2001) Quality of life measures in chronic diseases of childhood. Health Technology Assessment, 5, 1–157
Bullinger, M., Anderson, R., Cella, D., & Aaronson, N. (1995). Developing and evaluating cross-cultural instruments from minimum requirements to optimal models. In S. A. Shumaker, R. A. Berzon (Eds.), The international assessment of Health-related quality of life. (pp. 83–91). New York: Oxford Rapid Communications.
Bullinger, M., Schmidt, S., Petersen, C., & DISABKIDS Group. (2002). Assessing quality of life of children with chronic health conditions and disabilities: A European approach. International Journal of Rehabilitation Research, 25, 197–206.
Skevington, S. M., Sartorius, N., & Amir, M. (2004). Developing methods for assessing quality of life in different cultural settings. The history of the WHOQOL instruments. Social Psychiatry and Psychiatric Epidemiology, 39, 1–8.
Simeoni, M. C., Debensason, D., Robitail S., et al. (2004). Agreement between youth and parent across seven European Countries: The DISABKIDS proxy quality of life research intrument. Quality of Life Research, 13(9), 1571.
The European DISABKIDS Group. (2006). The DISABKIDS questionnaires: Quality of life questionnaires for children with chronic conditions. Lengerich: Pabst Science Publishers.
Guillemin, F., Bombardier, C., & Beaton, D. (1993). Cross-cultural adaptation of health-related quality of life measures: Literature review and proposed guidelines. Journal of Clinical Epidemiology, 46, 1417–1432.
Petersen, C., Schmidt, S., Power, M., et al. (2005). Development and pilot-testing of a health-related quality of life chronic generic module for children and adolescents with chronic health conditions: a European perspective. Quality of Life Research, 14, 1065–1077.
Currie, C. E., Elton, R. A., Todd, J., & Platt, S. (1997). Indicators of socio-economic status for adolescents: The WHO Health Behaviour in School-aged Children Survey. Health Education Research, 12, 385–397
Ellert, U., Thomas, C., Ravens-Sieberer, U., et al. (2001). Using item response theory to improve QoL measures for children—first results from the child dynamic health assessment project. Quality of Life Research, 10, 203
Varni, J. W., Birwinkle, T. M., Seid, M., & Skarr, D. (2003). The PedsQL 4.0 as a pediatric population health measure: Feasability, reliability, and validity. Ambulatory Pediatrics, 3, 329–341.
Sapin, C., Simeoni, M. C., El Khammar, M., et al. (2005). Reliability and validity of the VSP-A, a Health-related Quality of Life instrument for ill and healthy adolescents. The Journal of Adolescent Health, 36(4), 327–336.
Ravens-Sieberer, U., & Bullinger, M. (1998). Assessing health-related quality of life in chronically ill children with the German KINDL: First psychometric and content analytical results. Quality of Life Research, 7, 399–407.
Stein, R. E. K., & Jessop, D. J. (1990). Functional Status II(R): A measure of child health status. Medical Care, 28, 1041–1055.
Goodman, R. (1997). The Strengths and Difficulties Questionnaire: A research note. Journal of Child Psychology and Psychiatry, 38, 581–586.
Achenbach, T. M., & Ruffle, T. M. (2000). The Child Behavior Checklist and related forms for assessing behavioral/emotional problems and competencies. Pediatrics in Review, 21(8), 265–271.
Goodman, R., & Scott, S. (1999). Comparing the Strengths and Difficulties Questionnaire and the Child Behavior Checklist: Is small beautiful? Journal of Abnormal Child Psychology, 27(1), 17–24.
The WHOQOL group (1995). The World Health Organization Qualiy of Life assessment (WHOQOL): Position paper from the World Health Organization. Social Science and Medicine, 41, 1403–1409.
Crocker, L., & Algina, J. (1986). Introduction to classical and modern test theory. New York: Holt, Rinehart & Winston.
Cronbach, L. J. (1951). Coefficient alpha and the internal structure of tests. Psychometrika, 16, 297–334
Wright, B. D., & Stone, M. H. (1979). Best test design: Rasch Measurement. Chicago: MESA press.
Embretson, S. E., & Reise, S. P. (2000). Item response theory for psychologists. Mahwah NJ: Lawrence Erlbaum Associates.
Campbell, D. T., & Fiske, D. W. (1959). Convergent and discriminant validation by the multi-trait multi-method matrix. Psychological Bulletin, 56, 85–105.
Adamantios, D., & Judy, A. S. (2001). Introducing LISREL. London: Sage Publication.
Marsh, H. W., Balla, J. R., & Mc Donald, R. P. (1998). Goodness of fit Indexes in Confirmatory Factor Analysis: The effect of sample size. Psychological Bulletin, 103(3), 391–410.
Hu, L. T., & Bentler, P. M. (1995) Evaluating model fit. In: Hoyle R. H (Ed.), Structural equation modeling: Concepts, issues, and applications. (pp. 76–99). Newbury Park, CA: Sage.
Nunally, J. C., & Bernstein, I. R. (1994). Psychometric theory, 3rd ed. New York: McGraw Hill.
Riley, A. W., Forrest, C. B., Starfield, B., et al. (2004). The parent report form of the CHIP-Child Edition: Reliability and validity. Medical Care, 42(3), 210–220.
Goodman, E., Amick, B. C., Rezendes, M. O., et al. (1997). Influences of gender and social class on adolescents’ perceptions of health. Archives of Pediatrics & Adolescent Medicine, 151, 899–904.
Starfield, B., Riley, A. W., Witt, W. P., et al. (2002). Social class gradients in health during adolescence. Epidemiology and Community Health, 56, 354–361.
Rajmil, L., Serra-Sutton, V., Alonso, J., Herdman, M., Riley, A., & Starfield, B. (2003). Validity of the Child Health and Illness Profile-Adolescent Edition (CHIP-AE). Medical Care, 41(10), 1153–1163.
Ware, J. E., Harris, W. J., Gandek, B., et al. (1997). MAP-R for Windows: Multitrait/Multi-Item Analysis Program-Revised User’s Guide. Boston MA: Health Assessment Lab.
LISREL 8.51. Chicago, IL: Scientific Software International, Inc. 2001. SPSS for Windows, Rel. 11.0.0. Chicago: SPSS Inc; 1999.
Linacre, M. J., & Wright, B. D. (1998). A user’s guide to inSteps, Rasch-Model computer programs. Chicago: MESA Press.
Rajmil, L., Herdman, M., Fernandez de Sanmamed, M.J., et al. (2004) Generic health-related quality of life instruments in children and adolescents: A qualitative analysis of content. The Journal of Adolescent Health, 34(1), 37–45.
Chan, K. S., Mangione-Smith, R., Burwinkle, T. M., et al. (2005). The PedsQLTM: Reliability and validity of the short-form generic core scales and asthma module. Medicine Care 43(3), 256–265.
Aaronson, N. K., Cull, A. M., Kaaser, S., & Sprangers, M. A. G. (1996). The European organization for research and treatment of cancer (EORTC)—Modular approach to quality of life assessment in oncology: An update. In: B. Spilker (Ed.), Quality of life and pharmacoeconomics in clinical trials, 2 ed. (pp. 179–190). Philadelphia: Lippincott-Raven Publishers.
Pedhazur, E. J., & Pedhazur-Schmelkin, L. (1991). Measurement, design and analysis: An integrated approach. Hillsdale: Lawrence Erlbaum.
Streiner, D. L., & Norman, G. R. (1989). Health measurement scales. A practical guide to their development and use. Oxford: Oxford University Press.
Coste, J., Guillemin, F., Pouchot, J., & Fermanian, J. (1997). Methodological approaches to shortening composite measurement scales. Journal of Clinical Epidemiology, 50, 247–252.
Prieto, L., Alonso, J., & Lamarca, R. (2003). Classical test theory versus Rasch analysis for quality of life questionnaire reduction. Health and Quality of Life Outcomes, 1(1), 27.
Smith, G. T., & McCarthy, D. M. (1995). Methodological considerations in the refinement of clinical assessment instruments. Psychological Assessment, 7(3), 300–308.
Smith, G. T., McCarthy, D. M., & Anderson, K. G. (2000). On the sins of short-form develoment. Psychological Assessment, 12(1), 101–111.
Landgraf, J. M., Maunsell, E., Speechley, K. N., et al. (1998). Canadian-French, German and UK versions of the Child Health Questionnaire: Methodology and preliminary item scaling results. Quality of Life Research, 7, 433–445.
Sawyer, M. G., Reynolds, K. E., Couper, J. J., et al. (2005). A two-year prospective study of health-related quality of life of children with chronic illness-the parents’ perspective. Quality of Life Research, 14(2), 395–405
Raat, H., Bueving, H. J., de Jongste, J. C., et al. (2005). Responsiveness, longitudinal- and cross-sectional construct validity od the Pediatric Asthma Quality of Life Questionnaire (PAQLQ) in Dutch children with asthma. Quality of Life Research, 14(1), 265–272.
Okelo, S. O., Wu, A. W., Krishnan, J. A., et al. (2004). Emotional quality of life and outcomes in adolescents with asthma. The Journal of Pediatrics, 145(4), 523–529.
Sawyer, M. G., Reynolds, K. E., Couper, J. J., et al. (2004). Health-related quality of life of children and adolescents with chronic illness—a two-year prospective study. Quality of Life Research, 13(7), 1309–1319.
Anastasi, A. (1986) Evolving concepts of test validation. Annual Review of Psychology, 37, 1–15.
Schmidt, S., Debensason, D., Mühlan, H., et al. (2006). The DISABKIDS chronic generic QoL instrument: Field test results of a clinical study in children with chronic health conditions from a cross-cultural perspective. Journal of Clinical Epidemiology, 59, 587–598.
Acknowledgements
The DISABKIDS project was supported by the European Commission (QLG5-CT-2000-00716) within the Fifth Framework Program “Quality of Life and Management of Living Resources”.
Author information
Authors and Affiliations
Consortia
Corresponding author
Additional information
The DISABKIDS Group comprises a coordinating group (Prof. Monika Bullinger, Dr. Silke Schmidt, Dr. Corinna Petersen, Institute of Medical Psychology, University Clinic Hamburg-Eppendorf) and study centres in seven countries: Prof. Michael Quittan, Dr. Othmar Schuhfried, Department of Physical Medicine and Rehabilitation, University of Vienna, Austria; Dr. Marie Claude Simeoni, Dr. David Debensason, Delphine Orbicini, Department of Public Health, University Hospital of Marseille, France; Dr. Ute Thyen and Dipl.-Psych. Esther Müller-Godeffroy, Department of Paediatrics, Medical University of Lübeck, Germany; Dr. Athanasios Vidalis, Department of Psychiatry, Ass. Prof. John Tsanakas, Dr. Elpis Hatziagorou and Dr. Paraskevi Karagianni, Department of Paediatrics, Hippocratio Hospital, Greece; Dr. Hendrik Koopman and Dr. Rolanda Baars, Department of Paediatrics, Leiden University Medical Centre, Netherlands; Dr. John Eric Chaplin, Department of Paediatrics, University Hospital Lund, Sweden; Prof. Mick Power, Dr. Clare Atherton and Dr. Peter Hoare, Clinical and Health Psychology, University of Edinburgh, United Kingdom.
Rights and permissions
About this article
Cite this article
Simeoni, MC., Schmidt, S., Muehlan, H. et al. Field testing of a European quality of life instrument for children and adolescents with chronic conditions: the 37-item DISABKIDS Chronic Generic Module. Qual Life Res 16, 881–893 (2007). https://doi.org/10.1007/s11136-007-9188-2
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s11136-007-9188-2