The proxy problem: child report versus parent report in health-related quality of life research
Tóm tắt
This study evaluates the agreement between child and parent reports on children's health-related quality of life (HRQoL) in a representative sample of 1,105 Dutch children (age 8–11 years old). Both children and their parents completed a 56 item questionnaire (TACQOL). The questionnaire contains seven eight-item scales: physical complaints, motor functioning, autonomy, cognitive functioning, social functioning, positive emotions and negative emotions. The Pearson correlations between the child and parent reports were between 0.44 and 0.61 (p<0.001). The intraclass correlations were between 0.39 and 0.62. On average, the children reported a significantly lower HRQoL than their parents on the physical complaints, motor functioning, autonomy, cognitive functioning and positive emotions scales (paired t-test: p<0.05). Agreement on all of the scales was related to the magnitude of the HRQoL scores and to some background variables (gender, age, temporary illness and visiting a physician). According to multitrait-multimethod analyses, both the child and parent reports proved to be valid.
Tài liệu tham khảo
Ebrahim S. Clinical and public health perspectives and applications of health-related quality of life measurement. Soc Sci Med 1995; 41: 1383-1394.
Magaziner J, Simonsick EM, Kashner TM, Hebel JR. Patient-proxy response comparability on measures of patient health and functional status. J Clin Epidemiol 1988; 41: 1065-1074.
Bullinger M, Ravens-Sieberer U. Stand der Forschung zur gesundheitsbezogenen Lebensqualität von Kindern: eine Literaturanalyse (State of the art of health-related quality of life research in children: a literature review). Prävent. und Rehab. 1995; 7: 106-121.
Epstein AM, Hall JA, Tognetti J, Son LH, Conant L. Using proxies to evaluate quality of life. Med Care 1989; 27: S91-S98.
Theunissen NCM. Living with end-stage renal failure: a developmental task for the adolescent. In: Ter Laak JJF, ed. Developmental Tasks: Research Program Developmental Psychology Utrecht-Moscow. Utrecht: Utrecht University: 1994: 95-114.
Huisman J, Slijper FME, Sinnema G, et al. Psychosocial functioning of short prepubertal children and girls with Turner's syndrome. Acta Paediatr Scand 1991; (Suppl 377): 162-162.
Siegel PT, Clopper R, Stabler B. Psychological impact of significantly short stature. Acta Paediatr Scand 1991; (Suppl 377): 14-18.
Eiser C. Making sense of chronic disease. The eleventh Jack Tizard memorial lecture. J Child Psychol Psychiat 1994; 35: 1373-1389.
Kaplan RM, Anderson JP. A general health policy model: update and applications. Health Serv Res 1988; 23: 203-235.
Rogerson RJ. Environmental and health-related quality of life: conceptual and methodological similarities. Soc Sci Med 1995; 41: 1373-1382.
Jordan TE. Estimating the quality of life for children around the world: NICQL '92. Soc Indicat Res 1993; 30: 17-38.
Lindström B. Measuring and improving quality of life for children. In: Lindström B, Spencer N, eds. Social Paediatrics. Oxford: Oxford University Press, 1995: 571-585.
Sprangers MAG, Aaronson NK. The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease: a review. J Clin Epidemiol 1992; 45: 743-760.
WHOQOL Group. The World Health Organization quality of life Assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med 1995; 41: 1403-1409.
Torrance GW. Utility approach to measuring health-related quality of life. J Chronic Dis 1987; 40: 593-603.
Cella DF, Tulsky DS. Quality of life in cancer: definition, purpose and method of measurement. Cancer Invest 1993; 11: 327-336.
Sweeny AJ, Creer TL. Health-related-quality-of-life assessment in medical care. Dis Month 1995; 16: 5-64.
Bowling A, Brazier J. ‘Quality of Life’ in social science and medicine: introduction. Soc Sci Med 1995; 41: 1337-1338.
Baker GA, Smith DF, Dewey M, Jacoby A, Chadwick DW. The initial development of a health-related quality of life model as an outcome measure in epilepsy. Epilepsy Res 1993; 16: 65-81.
Ferell BR, Hassey Dow K, Grant M. Measurement of the quality of life in cancer survivors. Qual Life Res 1995; 4: 523-531.
Hays RD, Vickrey BG, Hermann BP, et al. Agreement between self-reports and proxy reports of quality of life in epilepsy patients. Qual Life Res 1995; 4: 159-168.
Vogels T, Theunissen NCM, Verrips GH, Koopman HM, Verloove-Vanhorick SP, Kamphuis RP. Het meten van kwaliteit van leven bij kinderen met chronische aandoeningen (Assessing health-related quality of life in chronically ill children). TIAZ 1996; 3: 104-111.
Rosenberg R. Health-related quality of life between naturalism and hermeneutics. Soc Sci Med 1995; 41: 1411-1415.
Amir M, Bar-On DM, Penso R. Positive-Negative Evaluation (PNE) scale: a new dimension of the subjective domains of quality of life measure. Qual Life Res 1996; 5: 73-80.
Sprangers MAG, Rozemuller N, Van den Berk MBP, Boven SV, Van Dam FSAM. Response shift bias in longitudinal quality of life research. Qual Life Res 1994; 3: 49-49.
Bruil J, Maes S. Assessing quality of life among children with a chronic illness: the development of a questionnaire. Poster presented at the First Dutch Conference on Psychology and Health, Kerkrade, The Netherlands, 6–8 November 1995; 1-1.
Bellman MH, Paley CE. Pain control in children: parents underestimate children's pain. BMJ 1993; 307: 1563-1563.
van Westerlaak JM, Kropman JA, Collaris JWM. Beroepenklapper (Professional index). Nijmegen: Instituut voor Toegepaste Sociologie, 1975.
Bland JM, Altman DG. Statistical methods for assessing agreement between two methods of clinical measurement. The Lancet 1986; 307-310.
Deyo RA, Diehr P, Patrick DL. Reproducibility and responsiveness of health status measures: statistics and strategies for evaluation. Control Clin Trials 1991; 12: 142S-158S.
Marshall GN, Hays RD. Evaluating agreement between clinical assesment methods. Inter J Methods Psychiatr Res 1994; 4: 249-257.
Steiger JH. Tests for comparing elements of a correlation matrix. Psychol Bull 1980; 87: 245-251.
Campbell DT, Fiske DW. Convergent and discriminant validation by the multitrait-multimethod matrix. Psychol Bull 1959; 56: 81-105.
Schmitt N, Stults DM. Methodology review: analysis of multitrait-multimethod matrices. Appl Psychol Measure 1986; 10: 1-22.
Stacy A W, Widaman K F, Hays R, DiMatteo MR. Validity of self-reports of alcohol and other drug use: a multitrait-multimethod assessment. J Personality Soc Psychol 1985; 49: 219-232.
Dunn G, Everitt B, Pickles A. Multitrait-multimethod and multiple indicator multiple cause models. In: Dunn G, Everitt B, Pickles A, eds. Modelling, Covariances and Latent Variables using EQS. London: Chapman & Hall, 1994: 77-87.
Ennett ST, DeVellis BM, Earp JA, Kredich D, Warren RW, Wilhelm CL. Disease experience and psychosocial adjustment in children with juvenile rheumatoid arthritis: children's versus mothers' reports. J Pediatr Psychol 1991; 16: 557-568.
Epkins CC. Teachers' ratings of inpatient children's depression, anxiety and aggression: A preliminary comparison between inpatient-facility and community-based teachers' ratings and their correspondence with children's self-reports. J Clin Child Psychol 1995; 24: 63-70.
Achenbach TM, McConaughy SH, Howell CT. Child/Adolescent behavioral and emotional problems: implications of cross-informant correlations for situational specificity. Psychol Bull 1987; 101: 213-232.
Zivcic I. Emotional reactions of children to war stress in Croatia. J Am Acad Child Adolesc Psychiatr 1993; 32: 709-713.