Abstract
A systematic review was conducted to determine the relationship between ratings of children's health-related quality of life (HRQoL) made by parents and children. This was investigated in relation to four questions:- is agreement greater for some domains (e.g. physical HRQoL) than others?; do parents perceive illness to have a greater impact than their child?; how is agreement affected by child age, gender and illness status?; and is the relationship between proxy ratings affected by the method of data collection? Fourteen studies were identified. Consistent with previous research, there was greater agreement for observable functioning (e.g. physical HRQoL), and less for non-observable functioning (e.g. emotional or social HRQoL). Three studies assessed whether parents perceive the illness to have a greater impact than their child, but no clear conclusions could be drawn given differences in measures used. Agreement is better between parents and chronically sick children compared with parents and their healthy children, but no effects were found for age or gender. All of these results may be dependent on the specific measure of HRQoL employed. There remain strong arguments for obtaining information from both parents and children whenever possible.
Similar content being viewed by others
References
Goodwin DA, Boggs SR, Graham-Pole J. Development and validation of the Pediatric Oncology Quality of Life Scale. Psychol Assess 1994; 6(4): 321–328.
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.
Camp LD, O'Sullivan PS. Comparison of medical, surgical, and oncology patients' descriptions of pain and nurses' documentation of pain assessments. J Adv Nursing 1987; 12: 593–598.
Teske K, Daut RL, Cleeland CS. Relationships between nurses' observations and patients' self-reports of pain. Pain 1983; 16(3): 289–296.
Derogatis LR, Abeloff MD, McBeth CD. Cancer patients and their physicians in the perception of psychological symptoms. Psychosomatics 1976; 17: 197–201.
Jachuck SJ, Brierley H, Jachuck S, Willcox PM. The effects of hypotensive drugs on the quality of life. J Royal College General Practice 1982; 32: 103–105.
Achenbach TM, McConaughy SH, Howell CT. Child/adolescent behavioural and emotional problems: Implications of cross-informant correlations for situational specificity. Psychol Bull 1987; 101(2): 213–232.
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 Pediat Psychol 1991; 16(5): 557–568.
Patrick DL, Bergner M. Measurement of health status in the 1990s. Annu Rev Public Health 1990; 11(165): 183.
Guyatt GH, Feeny DH, Patrick DL. Measuring health-related quality-of-life. Ann Internal Med 1993; 118: 622–629.
Walker LS, Heflinger CA. Quality of life predictors of outcome in pediatric abdominal pain patients: Findings at initial assessment and 5–year follow-up. In: Drotar D (ed.), Measuring Health-Related Quality of Life in Children and Adolescents. New Jersey: Lawrence Erlbaum, 1998.
Glaser AW, Abdul RN, CL U, Walker DA. School behaviour and health status after central nervous system tumours in childhood. Brit J Cancer 1997a; 76(5): 643–650.
Glaser AW, Davies K, Walker D, Brazier D. Influence of proxy respondents and mode of administration on health status assessment following central nervous system tumours in childhood. Qual Life Res 1997b; 6(1): 43–53.
Billson AL, Walker DA. Assessment of health status in survivors of cancer. Arch Dis Childhood 1994; 70(3): 200–204.
Phipps S, Dunavant M, Jayawardene D, Srivastiva DK. Assessment of health related quality of life in acute in-patient settings: Use of the BASES Scales in children under-going bone marrow transplantation. Int J Cancer 1999; S12: 18–24.
Aaronson NK. Assessing the quality of life of patients in cancer clinical trials: Common problems and common sense. European Journal of Cancer 1992; 28A(8–9): 1304–1307.
Bryman A, Cramer D. Quantitative Data Analysis with SPSS Release 8 for Windows: A Guide for Social Scientists. London: Routledge, 1999.
Cohen L, Holliday M. Statistics for Social Scientists. London. Harper & Row. 1982.
Bruil J. Development of a Quality of Life Instrument for Children with Chronic Illness. The Netherlands: Health Psychology, Leiden University, 1999.
Varni JW, Seid M, Rode CA. The PedsQL: Measurement model for the pediatric quality of life inventory. Med Care 1999; 37(2): 126–139.
Varni JW, Katz ER, Seid M, Quiggins DJ, Friedman-Bender A, Castro CM. The Pediatric Cancer Quality of Life Inventory (PCQL). I. Instrument development, descriptive statistics, and cross-informant variance. J Behavioral Med 1998; 21(2): 179–204.
Eiser C, Havermans T, Craft A, Kernahan JA. Development of a measure to assess the perceived illness experience after treatment for cancer. Arch Dis Childhood 1995; 72(4): 302–307.
Vogels T, Verrips GH, Verloove-Vanhorick SP, et al. Measuring health-related quality of life in children: The development of the TACHRQOL parent form. Qual Life Res 1998; 7(5): 457–465.
Varni JW, Katz ER, Quiggins DJL, Friedman-Bender A. The Pediatric Quality of Life Inventory-32 (PCQL-32): I. Reliability and validity. Cancer 1998; 82: 1184–1196.
Langeveld JH, Koot HM, Passchier J. Headache intensity and quality of life in adolescents: How are changes in headache intensity in adolescents related to changes in experienced quality of life? Headache 1996; 37(1): 37–42.
Theunissen NC, Vogels T, Koopman HM, et al. The proxy problem: Child report versus parent report in health-related quality of life research. Qual Life Res 1998; 7(5): 387–397.
Czyzewski DI, Mariotto MJ, Bartholomew LK, LeCompte SH, Sockrider MM. Measurement of quality of well being in a child and adolescent cystic fibrosis population. Med Care 1994; 32(9): 965–972.
Kaplan RM, Bush JW, Berry CC. Health status: Types of validity for an index of well-being. Health Services Res 1976; 11: 478–507.
Graham P, Stevenson J, Flynn D. A new measure of health-related quality of life for children: Preliminary findings. Psychol Health 1996; 12(5): 655–665.
Feeny D, Furlong W, Barr RD, Torrance GW, Rosenbaum P, Weitzman S. A comprehensive multiattribute system for classifying the health status of survivors of childhood cancer. J Clin Oncol 1992; 10(6): 923–928.
Bland JM, Altman DG. Statistical methods for assessing agreement between two methods of clinical measurement. The Lancet 1986; 36(ii): 307–310.
Sneeuw KCA, Aaronson NK, Sprangers MAG, Detmar SB, Wever LD, Schornagel JH. Comparison of patient and proxy EORTC QLQ-C30 ratings in assessing the quality of life of cancer patients. J Clin Epidemiol 1998; 51(7): 617–631.
Landgraf JM, Abetz LN. Functional status and well-being of children representing three cultural groups: Initial self-reports using the CHQ-CF87. Psychol Health 1997; 12(6): 839–854.
Epstein AM, Hall JA, Tognetti J, Son LH, Conant L. Using proxies to evaluate quality of life. Can they provide valid information anout patients' health status and satisfaction with medical care? Med Care 1989; 27: S91–S98.
Phipps S, Hinds PS, Channell S, Bell GL. Measurement of behavioural, affective, and somatic responses to pediatric bone marrow transplantation: Development of the BASES scale. J Pediat Oncol Nursing 1994; 11(3): 109–117.
Eiser C, Koper S, Cool P, Grimer R. The perceived illness. Experience scale (PIE): reliability and validity revisited. Child, Care Health and Development 1999; 25: 179–190.
Author information
Authors and Affiliations
Corresponding author
Rights and permissions
About this article
Cite this article
Eiser, C., Morse, R. Can parents rate their child's health-related quality of life? Results of a systematic review. Qual Life Res 10, 347–357 (2001). https://doi.org/10.1023/A:1012253723272
Issue Date:
DOI: https://doi.org/10.1023/A:1012253723272