Comparing longitudinal assessments of quality of life by patient and parent in newly diagnosed children with cancer: the value of both raters’ perspectives
Rent the article at a discountRent now
* Final gross prices may vary according to local VAT.Get Access
Health-related quality of life (HRQoL) information from children facing rare and/or life-threatening disease serves important clinical functions. Longitudinal HRQoL ratings from 222 child–parent dyads collected at four time points during the first 16 weeks of cancer treatment are presented. Patient and parent HRQoL reports at the domain level, based on the Pediatric Quality of Life Inventory™ 4.0 Generic Core Scales, were compared over time, and variation in child/parent agreement by age, treatment intensity, and time on treatment was explored.
Patients and methods
Analyses included consideration of missingness, differences between child and parent group mean domain scores averaged over assessments, agreement between individual child and parent, compared to group averages, and within-subject changes between assessments.
Children consistently reported higher functioning than their parents with differences varying by child age and HRQoL domain and diminishing over time. No differences were found by intensity of treatment. The between-subject correlation ranged from 0.61 (social functioning) to 0.86 (physical functioning) across time. Agreement within groups, defined by age, treatment intensity, and time were generally similar.
Results indicate moderate-to-good child/parent agreement with variability by domain of HRQoL. Findings underscore the complexity of self- and proxy-based report and support the use of information from both raters.
- Chang, P. C., & Yeh, C. H. (2004). Agreement between child self-report and parent proxy-report to evaluate quality of life in children with cancer. Psychooncology, 14, 125–134.
- Cronbach, L. (1951). Coefficient alpha and the internal structure of test. Psychometrika, 16, 297–334. doi:10.1007/BF02310555. CrossRef
- Czyzewski, D. I., Mariotto, M. J., Bartholomew, L. K., LeCompte, S. H., & Sockrider, M. M. (1994). Measurement of quality of well being in a child and adolescent cystic fibrosis population. Medical Care, 32, 965–972. CrossRef
- Davis, E., Nicolas, C., Waters, E., Cook, K., Gibbs, L., Gosch, A., et al. (2007). Parent-proxy and child self-reported health-related quality of life: Using qualitative methods to explain the discordance. Quality of Life Research, 16, 863–871. CrossRef
- Eiser, C., & Eiser, J. R. (2000). Social comparisons and quality of life among survivors of childhood cancer and their mothers. Psychology & Health, 15, 435–450. CrossRef
- Gong, G. W. K., Young, N. L., Dempster, H., Porepa, M., & Feldman, B. M. (2007). The quality of my life questionnaire: The minimal clinically important difference for pediatric rheumatology patients. Journal of Rheumatology, 34, 581.
- Hinds, P. S., Billups, C. A., Cao, X., Gattuso, J. S., Burghen, E., West, N., et al. (2009). Health-related quality of life in adolescents at the time of diagnosis with osteosarcoma or acute myeloid leukemia. European Journal of Oncology Nursing, 13, 156–163. CrossRef
- Hinds, P. S., Brandon, J., Allen, C., Hijiya, N., Newsome, R., & Kane, J. R. (2007). Patient-reported outcomes in end-of-life research in pediatric oncology. Journal of Pediatric Psychology, 32, 1079–1088. CrossRef
- Hinds, P. S., Gattuso, J. S., Billups, C. A., West, N. K., Wu, J., Rivera, C., et al. (2009). Aggressive treatment of non-metastatic osteosarcoma improves health-related quality of life in children and adolescents. European Journal of Cancer, 45, 2007–2014. CrossRef
- 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, 397–406. CrossRef
- Koopman, H. M., Koetsier, J. A., Taminiau, A. H. M., Hijnen, K. E., Bresters, D., & Egeler, R. M. (2005). Health-related quality of life and coping strategies of children after treatment of a malignant bone tumor: A 5-year follow-up study. Pediatric Blood & Cancer, 45, 694–699. CrossRef
- Landis, J. R., & Koch, G. G. (1977). The measurement of observer agreement for categorical data. Biometrics, 33, 159–174. doi:10.2307/2529310. CrossRef
- Lustig, R. H., Hinds, P. S., Ringwald-Smith, K., Christensen, R. K., Kaste, S. C., Schreiber, R. E., et al. (2003). Octreotide therapy of pediatric hypothalamic obesity: A double-blind, placebo-controlled trial. Journal of Clinical Endocrinology and Metabolism, 88, 2586–2592. CrossRef
- Noyes, J. (2007). Comparison of ventilator-dependent child reports of health-related quality of life with parent reports and normative populations. Journal of Advanced Nursing, 58, 1–10. CrossRef
- Nunnally, J., & Bernstein, I. (1994). Psychometric theory. New York: McGraw-Hill, Inc.
- Parsons, S., Terrin, N., Ratichek, S., Tighiouart, H., & Chang G., For the Journeys to Recovery Study. (2007). The influence of clinical events after HSCT on parent and child assessments of HRQL. International society for quality of life research meeting abstracts. The QLR Journal A, 38, 1371.
- Razzouk, B. I., Hord, J. D., Hockenberry, M., Hinds, P. S., Feusner, J., Williams, D., et al. (2006). Double-blind, placebo-controlled study of quality of life, hematologic end points, and safety of weekly epoetin alfa in children with cancer receiving myelosuppressive chemotherapy. Journal of Clinical Oncology, 24, 3583–3589. CrossRef
- Sherifali, D., & Pinelli, J. (2007). Parent as proxy reporting: Implications and recommendations for quality of life research. Journal of Family Nursing, 13, 83–98. CrossRef
- Upton, P., Lawford, J., & Eiser, C. (2008). Parent-child agreement across child health-related quality of life instruments: A review of the literature. Quality of Life Research, 17, 895–913. CrossRef
- Varni, J. W. (2010). The PedsQL scoring algorithm: Scoring the pediatric quality of life inventory. Retrieved April 16, 2007 from http://www.pedsql.org/score.html.
- 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. CrossRef
- Varni, J. W., Lane, M. M., Burwinkle, T. M., Fontaine, E. N., Youssef, N. N., Schwimmer, J. B., et al. (2006). Health-related quality of life in pediatric patients with irritable bowel syndrome: A comparative analysis. Journal of Developmental and Behavioral Pediatrics, 27, 451–458. CrossRef
- Varni, J. W., Limbers, C., & Burwinkle, T. (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.
- Varni, J. W., Limbers, C. A., & Burwinkle, T. M. (2007). Parent proxy-report of their children’s health-related quality of life: An analysis of 13, 878 parents’ reliability and validity across age subgroups using the PedsQL™ 4.0 Generic Core Scales. Health and Quality of Life Outcomes, 5, 1–10. CrossRef
- Varni, J. W., Seid, M., Knight, T. S., Uzark, K., & Szer, I. S. (2002). The PedsQL™ 4.0 Generic Core Scales: Sensitivity, responsiveness, and impact on clinical decision-making. Journal of Behavioral Medicine, 25, 175–193. CrossRef
- Verrips, G. H., Vogels, A. G., den Ouden, A. L., Paneth, N., & Verloove-Vanhorick, S. P. (2000). Measuring health-related quality of life in adolescents: Agreement between raters and between methods of administration. Child: Care, Health and Development, 26, 457–469. doi:10.1046/j.1365-2214.2000.00181.x. CrossRef
- Verrips, G. H., Vogels, T. G. C., Koopman, H. M., Theunissen, N. C. M., Kamphuis, R. P., Fekkes, M., et al. (1999). Measuring health-related quality of life in a child population. The European Journal of Public Health, 9, 188–193. CrossRef
- Youssef, N. N., Murphy, T. G., Langseder, A. L., & Rosh, J. R. (2006). Quality of life for children with functional abdominal pain: A comparison study of patients’ and parents’ perceptions. Pediatrics, 117, 54–59. CrossRef
- Comparing longitudinal assessments of quality of life by patient and parent in newly diagnosed children with cancer: the value of both raters’ perspectives
Quality of Life Research
Volume 21, Issue 5 , pp 915-923
- Cover Date
- Print ISSN
- Online ISSN
- Springer Netherlands
- Additional Links
- Pediatric oncology
- Patient- and parent-reported health-related quality of life
- Patient and parent agreement
- Proxy ratings
- Industry Sectors
- Author Affiliations
- 1. The Health Institute, Institute for Clinical Research and Health Policy Studies, Tufts Medical Center, 800 Washington St., #345, Boston, MA, 02111, USA
- 2. Department of Biostatistics and Informatics, Colorado School of Public Health and Colorado Health Outcomes Program School of Medicine, University of Colorado Denver, Denver, CO, USA
- 3. J&J Pharmaceutical Research and Development, LLC, Raritan, NJ, USA
- 4. Children’s National Medical Center, George Washington University, Washington, DC, USA