To systematically review the literature published since 1999 on paediatric health-related quality of life (HRQL) in relation to parent–child agreement.
Literature searches used to identify studies which evaluated parent–child agreement for child HRQL measures.
Nineteen studies were identified, including four HRQL instruments. The Pediatric Quality of Life Inventory™ (PedsQL™) was most commonly used. Differences in parent–child agreement were noted between domains for different measures. The impact of child and parent characteristics were not consistently considered; however parents of children in a nonclinical sample tended to report higher child HRQL scores than children themselves, while parents of children with health conditions tended to underestimate child HRQL.
Despite increasing numbers of studies considering children’s HRQL, information about variables contributing to parent–child agreement levels remains limited. Authors need to consistently provide evidence for reliability and validity of measures, and design studies to systematically investigate variables that impact on levels of parent–child agreement.
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Health-related quality of life
Hays, R. D., Vickrey, B. G., Hermann, B. P., Perrine, K., Cramer, J., Meador, K., et al. (1995). Agreement between self reports and proxy reports of quality of life in epilepsy patients. Quality of Life Research, 4, 159–168.
Le Coq, E. M., Boeke, A. J. P., Bezemer, P. D., Colland, V. T., & Eijk, J. H. M. (2000). Which source should we use to measure quality of life in children with asthma: the children themselves or their parents? Quality of Life Research, 9(6), 625–636.
Palermo, T. M., Schwartz, L., Drotar, D., & McGowan, K. (2002). Parental report of health related quality of life in children with sickle cell disease. Journal of Behavioral Medicine, 25, 269–283.
Warschburger, P., Landgraf, J. M., Petermann, F., & Freidel K. (2003). Health-related quality of life in children assessed by their parents: Evaluation of the psychometric properties of the CHQ-PF50 in two German clinical samples. Quality of Life Research, 12(3), 291–301.
Varni, J.W., Seid, M., & Rode, C.A. (1999). The PedsQL: Measurement model for the pediatric quality of life inventory. Medical Care, 37(2), 126–139.
Varni, J. W., Limbers, C. A., & Burwinkle, T. M. (2007). How young can children reliably and validly self-report their health-related quality of life?: An analysis of 8,591 children across age subgroups with the PedsQL 4.0 Generic Core Scales. Health and Quality of Life Outcomes, 5, 1.
Cremeens, J., Eiser, C., & Blades, M. (2006). Characteristics of health-related measures for children aged three to eight years: A review of the literature. Quality of Life Research, 15(4), 739–754.
Varni, J. W., Seid, M., & Kurtin, P. S. (2001). PedsQL™ 4.0: Reliability and validity of the pediatric quality of life inventory™ version 4.0 generic core scales in healthy and patient population. Medical Care, 39(8), 800–812.
Pickard, S. A., & Knight, S. J. (2005). Proxy evaluation of health-related quality of life: A conceptual framework for understanding multiple proxy perspectives. Medical Care, 43(5), 493–499.
DeClerq, B., De Fruyt, F., Koot, H. M., & Benoit, Y. (2004). Quality of life in children surviving cancer: A personality and multi-informant perspective. Joural of Pediatric Psychology, 29(8), 579–590.
Waters, E. (2000). Quality of life. In V. Moyer (Ed.), Evidence-based pediatrics and child health (pp. 79–90). London: British Medical Journal Books.
Eiser, C., & Morse, R. (2001). Can parents rate their child’s health-related quality of life? Results of a systematic review. Quality of Life Research, 10(4), 347–347.
Theunissen, N. C., Vogels, T. G., Koopman, H. M., Verrips, G. H., Zwinderman, K. A., Verloove-Vanhorick, S. P., et al. (1998) The proxy problem: Child report versus parent report in health-related quality of life research. Quality of Life Research, 7(5), 387–397.
Parsons, S. K., Barlow, S. E., Levy, S. L., Supran, S. E., & Kaplan, S. H. (1999). Health-related quality of life in pediatric bone marrow transplant survivors: according to whom? International Journal of Cancer Supplement, 12, 46–51.
Sneeuw, K. C., Sprangers, M. A., & Aaronson, N. K. (2002). The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease. Journal of Clinical Epidemiology, 55, 1130–1143.
Scientific Advisory Committee of the Medical Outcomes Trust. (2002). Assessing health status and quality-of-life instruments: Attributes and review. Quality of Life Research, 11, 193–205.
Annett, R. D., Bender, B. G., DuHamel, T. R., & Lapidus, J. (2003). Factors influencing parent reports on quality of life for children with asthma. Journal of Asthma, 40(5), 577–587.
Modi, A. C., & Quittner, A. L. (2003). Validation of a disease-specific measure of health-related quality of life for children with cystic fibrosis. Journal of Pediatric Psychology, 28(7), 535–546.
Varni, J. W., Burwinkle, T. M., Sherman, S. A., Hanna, K., Berrin, S. J., Malcarne, V. L., et al. (2005). Health-related quality of life of children and adolescents with cerebral palsy: Hearing the voices of the children. Developmental Medicine and Child Neurology, 47, 592–597.
Levi, R. B., & Drotar, D. (1999). Health-related quality of life in childhood cancer: Discrepancy in parent–child reports. International Journal of Cancer, S12, 58–64.
Sudan, D., Horslen, S., Botha, J., Grant, W., Torres, C., Shaw, B., et al. (2004). Quality of life after pediatric intestinal transplantation: the perception of pediatric recipients and their parents. American Journal of Transplantation, 4, 407–413.
Loonen, H. J., Derkx, B. H. F., Koopman, H. M., & Heymans, H. S. A. (2002). Are parents able to rate the symptoms and quality of life of their offspring with IBD? Inflammatory bowel diseases, 8, 270–276.
April, K. T., Feldman, D. E., Platt, R. W., & Duffy, C. M. (2006). Comparison between children with juvenile idiopathic arthritis (JIA) and their parents concerning perceived quality of life. Quality of Life Research, 15, 655–661.
Huber, M. (2005). Health-related quality of life of austrian children and adolescents with cochlear implants. International Journal of Pediatric Otorhinolaryngolgy, 69, 1089–1101.
Young, N. L., Bradly, C. S., Wakefield, C. D., Barnard, D., Blanchette, V.S., & McCusker, P.J. (2006). How well does the Canadian haemophilia outcomes-kids’ life assessment tool (CHO-KLAT) measure the quality of life of boys with haemophilia? Pediatric Blood and Cancer, 47(3), 305–311.
Krol, Y., Grootenhuis, M. A., Destree-Vonk, A., Lubbers, L. J., Koopman, H. M., & Last, B. F. (2003). Health related quality of life in children with congenital heart disease. Psychology and Health, 18(2), 251–260.
Theunissen, N. C., Kamp, G. A., Koopman, H. M., Zwinderman, K. A., Vogels, T., & Wit, J. M. (2002). Quality of life and self-esteem in children treated for idiopathic short stature. Journal of Pediatrics, 140, 507–515.
Sturms, L. M., van der Sluis, C., Grootholf, J. W., ten Duis, H. J., & Eisma, W. H. (2003). Young traffic victims’ long-term health-related quality of life: Child self-reports and parental reports. Archives of Physical Medicine and Rehabilitation, 84, 431–436.
Chang, P., & Yeh, C. (2005). Agreement between child self-report and parent proxy-report to evaluate quality of life in children with cancer. Psychooncology, 14(2), 125–134.
Yeh, C., Hung, L., & Chao, K. (2004). The quality of life for cancer children (QOLCC) for Taiwanese children with cancer (part II): Feasibility, cross-informants variance and clinical validity. Psychooncology, 13, 171–176.
Havermans, T., Vreys, M., Proesmans, M., & De Boeck, C. (2005). Assessment of agreement between parents and children on health-related quality of life in children with cystic fibrosis. Child: Care Health and Development, 32(1), 1–7.
Elkateb, N., Ibrahim, A. S., & Riad, S. (2002). Quality of life of adolescent cancer patients as perceived by patients nurses and mothers. Journal of the Egyptian National Cancer Institute, 14, 343–348.
Baatiaansen, D., Koot, H. M., Bongers, I. L., Varni, J. W., & Verhulst, F. C. (2004). Measuring quality of life in children referred for psychiatric problems: psychometric properties of the PedsQL™ 4.0 generic core scales. Quality of Life Research, 13, 489–493.
Friefeld, S., Yeboah, O., Jones, J. E., & deVeber, G. (2004). Health-related quality of life and its relationship to neurological outcome in child survivors of stroke. CNS Spectrums, 9, 465–475.
Brunner, H. I., Klein-Gitelman, M. S., Miller, M. J., Trombley, M., Baldwin, N., Kress, A., et al. (2004). Health of children with chronic arthritis: Relationship of different measures and the quality of parent proxy reporting. Arthritis and Rheumatism, 51, 763–773.
Sawyer, M. G., Whitman, J. N., Robertson, D. M., Taplin, J. E., Varni, J. W., & Baghurst, P. A. (2004). The relationship between health-related quality of life, pain and coping strategies in juvenile idiopathic arthritis. Rheumatology, 43, 325–330.
Sawyer, M. G., Carbone, J. A., Whitman, J. N., Robertson, D. M., Taplin, J. E., Varni, J. W., et al. (2005). The relationship between health-related quality of life, pain, and coping strategies in juvenile arthritis—a one year prospective study. Quality of Life Research, 14, 1585–1598.
Varni, J. W., Burwinkle, T. M., Berrin, S. J., Sherman, S. A., Artavia, K., Malcarne, V. L., et al. (2006). The PedsQL in pediatric cerebral palsy: Reliability, validity, and sensitivity of the generic core scales and cerebral palsy module. Developmental Medicine and Child Neurology, 48, 442–449.
Russell, K. M., Hudson, M., Long, A., & Phipps, S. (2006). Assessment of health-related quality of life in children with cancer: Consistency and agreement between parent and child reports. Cancer, 106(10), 2267–2274.
Sawyer, M., Antoniou, G., Toogood, I., & Rice, M. (1999). A comparison of parent and adolescent reports describing the health-related quality of life of adolescents treated for cancer. International Journal of Cancer, S12, 39–45.
Britto, M. T., Kotagal, U. R., Chenier, T., Tsevat, J., Atherton, H. D., & Wilmott, R. W. (2004). Differences between adolescents’ and parents’ reports of health-related quality of life in cystic fibrosis. Pediatric Pulmonology, 37, 15–171.
Powers, P. M., Gerstle, R., & Lapey, A. (2001). Adolescents with cystic fibrosis: family reports of adolescent health-related quality of life and forced expiratory volume in one second. Pediatrics, 107(5), 1–5.
HesKeth, K. D., Wake, M. A., & Cameron, F. J. (2004). HRQL and metabolic control in children with type 1 diabetes. Diabetes Care, 27, 415–420.
Wake, M., Hesketh, K., & Cameron, F. (2000). The child health questionnaire in children with diabetes: Cross-sectional survey of parent and adolescent-reported functional health status. Diabetes Medicine, 17, 700–707.
Panepinto, J. A., O’Mahar, K. M., DeBaum, M. R., Loberiza, F. R., & Scott, J. P. (2005). Health-related quality of life in children with sickle cell disease: Child and parent perception. British Journal of Haematology, 130, 437–444.
Klassen, A. F., Miller, A., & Fine, S. (2006). Agreement between parent and child report of quality of life in children with attention-deficit/hyperactivity disorder. Child: Care Health and Development, 32(4), 397–406.
Stancin, T., Drotar, D., Taylor, G., Owen Yeates, K., Wade, S. L., & Mercuri, M. N. (2002). Health-related quality of life of children and adolescents after traumatic brain injury. Pediatrics, 109(2), 1–8.
Forinder, U., LöF, C., & Winiarski, J. (2006). Quality of life following allogeneic stem cell transplantation, comparing parents’ and children’s perspective.
Houzager, B. A., Grootenhuis, M. A., Caron, H. N., & Last, B. F. (2005). Sibling self-report, parental proxies, and quality of life: The importance of multiple informants for siblings of a critically ill child. Pediatric Hematology and Oncology, 22, 25–40.
Verrips, G. H. W., Vogels, A. G. C., den Ouden, A. L., Paneth, N., & Verloove-Vanhorick, S. P. (2000). Measuring HRQL in adolescents: Agreement between raters and methods of administration. Child: Care Health and Development, 26, 457–469.
Bhat, S. R., Goodwin, T. L., Burwinkle, T. M., Lansdale, M. F., Dahl, G. V., Huhn, S. L., et al. (2005). Profile of daily life in children with brain tumors: an assessment of heath-related quality of life. Journal of Clinical Oncology, 23, 5493–5500.
Jokovic, A., Locker, D., Stephens, M., & Guyatt, G. (2003). Agreement between mothers and children aged 11–14 years in rating child oral health-related quality of life. Community Dental and Oral Epidemiology, 31, 335–343.
Ronen, G. M., Streiner, D. L., Rosenbaum, P., & Canadian Pediatric Epilepsy Network. (2003). Health-related quality of life in children with epilepsy: Development and validation of self-report and parent proxy measures. Epilepsia, 44(4), 598–612.
Eiser, C., Vance, Y. H., Horne, B., Glaser, A., & Galvin, H. (2003). The value of the PedsQL™ in assessing the quality of life in survivors of childhood cancer. Child: Care Health and Development, 29(2), 95–105.
Lawford, J., Volavka, N., & Eiser, C. (2001). A generic measure of quality of life for children aged three to eight years: Results of two preliminary studies. Pediatric Rehabilitation, 4(4), 197–207.
Norvik, A., Ionova, T., Kishtovich, A., Nikitina, T., & Varni, J. W. (2003) Development of the Russian Version of PedsQL™ 4.0 Generic Core Scales for quality of life research in 8–12 years old children. QoL Newsletter 2003; 30.
Powers, S. W., Patton, S. R., Hommel, K. A., & Hershey, A. D. (2003). Quality of life in childhood migraines: Clinical impact and comparison to other chronic illnesses. Pediatrics, 112(1), e1–e5.
Upton, P., Eiser, C., Cheung, I., Hutchings, H.A., Jenney, M., Maddocks, A., et al. (2005). Measurement properties of the UK-English version of the Pediatric Qualify of Life Inventory™ 4.0 (PedsQL™) generic core scales. Health and Quality of Life Outcomes, 3, 22.
Varni, J. W., & Burwinkle, T. M. (2006). The PedsQL™ as a patient-reported outcome in children and adolescents with attention-deficit/hyperactivity disorder: A population-based study. Health and Quality of Life Outcomes, 4, 26.
Williams, J., Wake, M., Hesketh, K., Maher, E., & Waters, E. (2005). Health-related quality of life of overweight and obese children. Journal of the American Medical Association, 293(1), 70–76.
Felder-Puig, R., Frey, E., Proksch, K., Gadner, H., & Topf, R. (2004). Validation of the German version of the Pediatric Quality of Life Inventory™ (PedsQL™) in childhood cancer patients off treatment and children with epilepsy. Quality of Life Research, 13, 223–234.
Poretti, A., Grotzer, M. A., Ribi, K., Schönle, E., & Boltshauser, E. (2004). Outcome of craniopharyngiona in children: Long term complications and quality of life. Developmental Medicine and Child Neurology, 46, 220–229.
Varni, J. W., Burwinkle, T. M., Katz, E. R., Meeske, K., & Dickinson, P. (2002). The PedsQL™ in pediatric cancer. Reliability and validity of the Pediatric Quality of Life Inventory™ generic core scales, multidimensional fatigue scale, and cancer module. Cancer, 94, 2090–2106.
Vance, Y. H., Morse, R. C., Jenney, M. E., & Eiser, C. (2001). Issues in measuring quality of life in childhood cancer: Measures, proxies, and parental mental health. Journal of Child Psychology and Psychiatry, 42(5), 661–667.
Varni, J. W., Seid, M., Smith Knight, T., Burwinkle, T., Brown, J., & Szer, I. S. (2002). The PedsQL™ in pediatric rheumatology. Reliability, validity, and responsiveness of the Pediatric Quality of Life Inventory™ generic core scales and rheumatology module. Arthritis and Rheumatism, 46(3), 714–725.
Varni, J. W., Burwinkle, T. M., Rapoff, M. A., Kamps, J. L., & Olson, N. (2004). The PedsQL™ in pediatric asthma: Reliability and validity of the Pediatric Quality of Life InventoryTM generic core scales and asthma module. Journal of Behavioral Medicine, 27(3), 297–318.
Uzark, K., Jones, K., Burwinkle, T. M., & Varni, J. W. (2003). The Pediatric Quality of Life Inventory™ in children with heart disease. Progress in Pediatric Cardiology, 18, 141–148.
Varni, J. W., Burwinkle, T. M., Jacobs, J. R., Gottschalk, M., Kaufman, F., & Jones, K. L. (2003). The PedsQL™ in type 1 and type 2 diabetes. Diabetes Care, 26, 631–637.
Waters, E., Stewart-Brown, S., & Fitzpatrick, R. (2003). Agreement between adolescent self-report and parent reports of health and well-being: Results of an epidemiological study. Child: Care Health and Development, 29(6), 501–509.
Parsons, S. K., Shih, M., DuHamel, K. N., Ostroff, J., Mayer, D. K., Austin, J., et al. (2006). Maternal perspectives on children’s health-related quality of life during the first year after pediatric hematopoietic stem cell transplant. Journal of Pediatric Psychology, 31(10), 1100–1115.
Goldbeck, L., & Melches, J. (2005). Quality of life in families of children with congenital heart disease. Quality of Life Research, 14, 1915–1924.
Varni, J. W., Burwinkle, T. M., Seid, M., & Skarr, D. (2003). The PedsQL 4.0 as a pediatric population health measure: Feasibility, reliability, and validity. Ambulatory Pediatrics, 3, 329–341.
Waters, E. B., Wright, M., Wake, M., Landgraf, J. M., & Salmon, L. (1999). Measuring the health and wellbeing of children and adolescents: A preliminary comparative evaluation of the Child Health Questionnaire in Australia. Ambulatory Child Health, 5, 131–141.
Waters, E., Salmon, L., & Wake, M. (2000). The parent form Child Health Questionnaire in Australia: Comparison of reliability, validity, structure and norms. Journal of Paediatric Psychology, 25, 381–391.
Goldbeck, L., & Braun, R. (2003). LQ-KID—Ein omputergestutztes Verfahren zur Erfassung der Lebensqualitat chronisch kranker Kinder und Jugendlicher. Prevention Rehabilitation, 15, 117–126.
Cohen, L., & Holliday, M. (1982). Statistics for Social Sciences. London: Harper and Row.
Pinkerton, C. R., Cushing, P., & Sepion, B. (1994). Childhood Cancer Management. London: Chapman Hall.
Freedom, R. M., Mikailian, H., Yoo, S. J., & Williams, W. (2004). The natural and modified history of congenital heart disease. Blackwell Publishing.
Hay, D. F., Pawlby, S., Sharp, D., Schmücker, G., Mills, A., Allen, H., et al. (1999). Parents’ judgments about young children’s problems: Why mothers and fathers might disagree yet still predict later outcomes. Journal of Child Psychology and Psychiatry, 40, 1249–1258.
Hill, J., Kondryn, H., Mackie, E., McNally, R., & Eden, T. (2003). Adult psychosocial functioning following childhood cancer: the different roles of sons’ and daughters’ relationships with their fathers and mothers. Journal of Child Psychology and Psychiatry, 44(5), 752–762.
Seiffge-Krengke, L. (1999). Families with daughters, families with sons: Different challengers for family relationships and marital satisfaction. Journal of Youth and Adolescence, 28, 325–342.
Wells, C. S., & Hintze, J. M. (2007). Dealing with assumptions underlying statistical tests. Psychology in Schools, 44, 495–502.
Sullivan, L. M., & D’Agostino, R. B. Sr. (2003). Robustness and power of analysis of covariance applied to ordinal scaled data as arising in randomized controlled trials. Statistical Methods, 22(8), 1317–1334.
Sprangers, M. A., & Aaronson, N. K. (1992). The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease: A review. Journal of Clinical Epidemiology, 45, 743–760.
Sweeting, H., & West, P. (1998). Health at age 11: Reports from schoolchildren and their parents. Archives of Disease in Childhood, 78, 427–434.
Klein, R. G. (1991). Parent–child agreement in clinical assessment of anxiety and other psychopathology: a review. Journal of Anxiety Disorders, 5, 187–198.
Edelbrock, C., Costello, A. J., Dulcan, M. K., Kalas, R., & Conover, N. C. (1986). Parent–child agreement on child psychiatric symptoms assessed via structured interview. Journal of Child Psychology and Psychiatry, 27(2), 181–190.
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Upton, P., Lawford, J. & Eiser, C. Parent–child agreement across child health-related quality of life instruments: a review of the literature. Qual Life Res 17, 895 (2008). https://doi.org/10.1007/s11136-008-9350-5
- Quality of Life
- Proxy Raters