Measuring adolescents' HRQoL via self reports and parent proxy reports: an evaluation of the psychometric properties of both versions of the KINDL-R instrument

Michael Erhart, Ute Ellert, Bärbel-Maria Kurth, Ulrike Ravens-Sieberer, Michael Erhart, Ute Ellert, Bärbel-Maria Kurth, Ulrike Ravens-Sieberer

Abstract

Background: Several instruments are available to assess children's health-related quality of life (HRQoL) based on self reports as well as proxy reports from parents. Previous studies have found only low-to-moderate agreement between self and proxy reports, but few studies have explicitly compared the psychometric qualities of both. This study compares the reliability, factorial validity and convergent and known group validity of the self-report and parent-report versions of the HRQoL KINDL-R questionnaire for children and adolescents.

Methods: Within the nationally representative cross-sectional German Health Interview and Examination Survey for Children and Adolescents (KiGGS), 6,813 children and adolescents aged 11 to 17 years completed the KINDL-R generic HRQoL instrument while their parents answered the KINDL proxy version (both in paper-and-pencil versions). Cronbach's alpha and confirmatory factor-analysis models (linear structural equation model) were obtained. Convergent and discriminant validity were assessed by calculating the Pearson's correlation coefficient for the Strengths and Difficulties Questionnaire. Known-groups differences were examined (ANOVA) for obese children and children with a lower familial socio-economic status.

Results: The parent reports achieved slightly higher Cronbach's alpha values for the total score (0.86 vs. 0.83) and most sub-scores. Confirmatory factor analysis revealed an acceptable fit of the six-dimensional measurement model of the KINDL for the parent (RMSEA=0.07) and child reports (RMSEA=0.06). Factorial invariance across the two versions did not hold with regards to the pattern of loadings, the item errors and the covariation between latent concepts. However the magnitude of the differences was rather small. The parent report version achieved slightly higher convergent validity (r=0.44-0.63 vs. r=0.33-0.59) in the Strengths and Difficulties Questionnaire. No clear differences were observed for known-groups validity.

Conclusion: Our study showed that parent proxy reports and child self reports on the child's HRQoL slightly differ with regards to how the perceptions, evaluations and possibly the affective resonance of each group are structured and internally consistent. Overall, the parent reports achieved slightly higher reliability and thus are favoured for the examination of small samples. No version was universally superior with regards to the validity of the measurements. Whenever possible, children's HRQoL should be measured via both sources of information.

References

    1. Hays RD, Vickrey BG, Hermann BP, Perrine K, Cramer J, Meador K, et al. Agreement between self-reports and proxy reports of quality of life in epilepsy patients. Qual Life Res. 1995;4:159–168. doi: 10.1007/BF01833609.
    1. Ravens-Sieberer U, Erhart M, Wille N, Wetzel R, Nickel J, Bullinger M. Generic health-related quality of life assessment in children and adolescents: methodological considerations. Pharmacoeconomics. 2006;24:1199–1220. doi: 10.2165/00019053-200624120-00005.
    1. Eiser C, Morse R. A review of measures of quality of life for children with chronic illness. Arch Dis Child. 2001;84:205–211. doi: 10.1136/adc.84.3.205.
    1. White-Koning M, Arnaud C, Dickinson HO, Thyen U, Beckung E, Fauconnier J, McManus V, Michelsen SI, Parkes J, Parkinson K, Schirripa G, Colver A. Determinants of Child-Parent Agreement in Quality-of-Life Reports: A European Study of Children With Cerebral Palsy. Pediatrics. 2007;120:e804–e814. doi: 10.1542/peds.2006-3272.
    1. Robitail S, Simeoni MC, Ravens-Sieberer U, Bruil J, Auquier P. Children proxies' quality-of-life agreement depended on the country using the European KIDSCREEN-52 questionnaire. J Clin Epidem. 2007;60:e1–469. doi: 10.1016/j.jclinepi.2006.09.007.
    1. Eiser C, Morse R. Quality-of-life measures in chronic diseases of childhood. Health Technol Assess. 2001;5:55–63.
    1. Jokovic A, Locker D, Guyatt G. How well do parents know their children? Implications for proxy reporting of child health related quality of life. Qual Life Res. 2004;13:1297–1307. doi: 10.1023/B:QURE.0000037480.65972.eb.
    1. De Civita M, Regier D, Alamgir AH, Anis AH, Fitzgerald MJ, Marra CA. Evaluating health-related quality-of-life studies in paediatric populations: some conceptual, methodological and developmental considerations and recent applications. Pharmacoeconomics. 2005;23:659–685. doi: 10.2165/00019053-200523070-00003.
    1. White-Koning M, Arnaud C, Bourdet-Loubère S, Bazex H, Colver A. Subjective quality of life in children with intellectual impairment – how can it be assessed? Developmental Medicine & Child Neurology. 2005;47:281–285. doi: 10.1017/S0012162205000526.
    1. Epstein AM, Hall JA, Tognetti J, Son LH, Conant L., Jr Using proxies to evaluate quality of life: can they provide valid information about patients' health status and satisfaction with medical care? Med Care. 1989;27:S91–S98. doi: 10.1097/00005650-198903001-00008.
    1. Lawford J, Volavka N, Eiser C. A generic measure of quality of life for children aged 3–8 years: results of two preliminary studies. Pediatr Rehabil. 2001;4:197–207. doi: 10.1080/13638490210124033.
    1. Solans M, Pane S, Estrada M-D, Serra-Sutton V, Berra S, Herdman M, Alonso J, Rajmil L. Health-related quality of life measurement in children and adolescents: A systematic review of generic and disease specific instruments. Value in Health. 2008;11:742–764. doi: 10.1111/j.1524-4733.2007.00293.x.
    1. Le Coq EM, Boeke AJP, Bezemer PD, Colland VT, van Eijk JTM. Which source should we use to measure quality of life in children with asthma: The children themselves or their parents? Qual Life Res. 2000;9:625–636. doi: 10.1023/A:1008977200176.
    1. Steele MM. Reliability and validity of the Oral Health Scale of the PedsQL: Measuring the relationship between child oral health and health-related quality of life. Dissertation Abstracts International: Section B: the Science and Engineering. 2008;69:701.
    1. Hainsworth KR, Davies WH, Khan KA, Weisman SJ. Development and preliminary validation of the Child Activity Limitations Questionnaire: Flexible and efficient assessment of pain-related functional disability. Journal of Pain. 2007;8:746–752. doi: 10.1016/j.jpain.2007.05.005.
    1. Laaksonen C, Aromaa M, Heinonen OJ, Suominen S, Salantera S. Paediatric health-related quality of life instrument for primary school children: Cross-cultural validation. Journal of Advanced Nursing. 2007;59:542–550. doi: 10.1111/j.1365-2648.2007.04347.x.
    1. Upton P, Maddocks A, Eiser C, Earnest PM, Williams J. Development of a measure of the health-related quality of life of children in public care. Child: Care, Health and Development. 2005;31:409–415. doi: 10.1111/j.1365-2214.2005.00520.x.
    1. Ravens-Sieberer U, the European KIDSCREEN Group . The KIDSCREEN Questionnaires – Quality of life questionnaires for children and adolescents – handbook. Lengerich: Papst Science Publisher; 2006.
    1. Verrips EGH, Vogels TGC, Koopman HM, Theunissen NCM, Kamphuis RP, Fekkes M, Wit JM, Verloove-Vanhorick SP. Measuring health-related quality of life in a child population. European Journal of Public Health. 1999;9:188–193. doi: 10.1093/eurpub/9.3.188.
    1. Varni JW, Burwinkle TM, Seid M. The PedsQLTM 4.0 as a school population health measure: Feasibility, reliability, and validity. Qual Life Res. 2006;15:203–215. doi: 10.1007/s11136-005-1388-z.
    1. Bastiaansen D, Koot HM, Bongers IL, Varni JW, Verhulst FC. Measuring quality of life in children referred for psychiatric problems: Psychometric properties of the PedsQL-super(TM) 4.0 generic core scales. Qual Life Research. 2004;13:489–495. doi: 10.1023/B:QURE.0000018483.01526.ab.
    1. Varni JW, Burwinkle TM, Rapoff MA, Kamps JL, Olson N. The PedsQL-super(TM) in pediatric asthma: Reliability and validity of the Pediatric Quality of Life Inventory-super(TM) generic core scales and asthma module. J Beh Medicine. 2004;27:297–318. doi: 10.1023/B:JOBM.0000028500.53608.2c.
    1. Ravens-Sieberer U. Der Kindl-R Fragebogen zur Erfassung der gesundheitsbezogenen Lebensqualität bei Kindern und Jugendlichen – Revidierte Form. In: Schumacher J, Klaiberg A, Brähler E, editor. Diagnostische Verfahren zu Lebensqualität und Wohlbefinden. Göttingen: Hogrefe Verlag; 2003. pp. 184–188.
    1. Kurth B-M, Kamtsiuris P, Hoelling H, Schlaud M, Doelle R, Ellert U, Kahl H, Knopf H, Lange M, Mensinck GBM, Neuhauser H, Schaffrath Rosario A, Scheidt-Nave C, Schenk L, Schlack R, Stolzenberg H, Thamm M, Thierfelder W, Wolf U. The challenge of comprehensively mapping children's health in a nation-wide health survey: Design of the German KiGGS-Study. BMC Public Health. 2008;8:196. doi: 10.1186/1471-2458-8-196.
    1. Goodman R. The Strengths and Difficulties Questionnaire: A research note. Journal of Child Psychology, Psychiatry, and Allied Disciplines. 1997;38:581–586. doi: 10.1111/j.1469-7610.1997.tb01545.x.
    1. Cole TJ, Bellizzi MC, Flegal KM, Dietz WH. Establishing a standard definition for child overweight and obesity worldwide: international survey. British Medical Journal. 2000;320:1240–1243. doi: 10.1136/bmj.320.7244.1240.
    1. Winkler J, Stolzenberg H. Der Sozialschichtindex im Bundesgesundheitssurvey. Gesundheitswesen. 1999;61:S178–S183.
    1. Bethell C, Read D, Stein RE, Blumberg SJ, Wells N, Newacheck PW. Identifying children with spezial health care needs: developement and evaluation of a short screening instrument. Ambulatory Pediatrics. 2002;2:38–48. doi: 10.1367/1539-4409(2002)002<0038:ICWSHC>;2.
    1. Nunnally JC, Bernstein IR. Psychometric Theory. 3. New York, NY: McCraw-Hill; 1994.
    1. Feldt LS. A test of the hypothesis that Cronbach's alpha reliability coefficient is the same for two tests administered to the same sample. Psychometrika. 1980;45:99–105. doi: 10.1007/BF02293600.
    1. Jöreskog KG, Sörbom D. LISREL 8: Users's Reference Guide. Lincolnwood: Scientific Software International, Inc; 2001.
    1. McDonald RP, Ho MHR. Principals and Practice in Reporting Structural Equation Analyses. Psychological Methods. 2002;7:64–82. doi: 10.1037/1082-989X.7.1.64.
    1. Jöreskog KG, Sörbom D. PRELIS 2: Users's Reference Guide. Lincolnwood: Scientific Software International, Inc; 2002.
    1. Hu L, Bentler PM. Cutoff Criteria for Fit Indexes in Covariance Structure Analysis. Conventional Criteria Versus New Alternatives. Structural Equation Modeling. 1999;6:1–55.
    1. Cohen J. Statistical Power Analysis for the Behavioural Sciences. New York, Erlbaum; 1988.
    1. Schenk L, Ellert U, Neuhauser H. Children and adolescents in Germany with a migration background. Methodological aspects in the German Health Interview and Examination Survey for Children and Adolescents (KiGGS) Bundesgessundheitsbl – Gesundheitsforsch – Gesundheitsschutz. 2007;50:590–599. doi: 10.1007/s00103-007-0220-z.
    1. Ungar WJ, Mirabelli C, Cousins M, Boydell KM. A qualitative analysis of a dyad approach to health-related quality of life measurement in children with asthma. Soc Sci Med. 2006;63:2354–2366. doi: 10.1016/j.socscimed.2006.06.016.
    1. Campbell DT, Fiske DW. Convergent and discriminant validation by the multitrait-Multimethod Matrix. Psychological Bulletin. 1959;103:276–279.

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