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

Volumn 21, Issue 5, 2012, Pages 915-923

  Parsons, Susan K ^a   Fairclough, Diane L ^b   Wang, Jim ^c   Hinds, Pamela S ^d  

^a TUFTS MEDICAL CENTER   (United States)

^b Global Health and Health Disparities   (United States)

^c JOHNSON AND JOHNSON PHARMACEUTICAL RESEARCH AND DEVELOPMENT   (United States)

^d GEORGE WASHINGTON UNIVERSITY   (United States)

Author keywords

Instrumentation; Patient and parent agreement; Patient and parentreported health related quality of life; Pediatric oncology; Proxy ratings

Indexed keywords

ADAPTIVE BEHAVIOR; ADOLESCENT; ARTICLE; CHILD; CHILD PARENT RELATION; CHILD WELFARE; CLINICAL TRIAL; COMPARATIVE STUDY; CONTROLLED CLINICAL TRIAL; CONTROLLED STUDY; DOUBLE BLIND PROCEDURE; FEMALE; HUMAN; LONGITUDINAL STUDY; MALE; MENTAL STRESS; NEOPLASM; PARENT; PRESCHOOL CHILD; PSYCHOLOGICAL ASPECT; PSYCHOMETRY; QUALITY OF LIFE; RANDOMIZED CONTROLLED TRIAL; REPRODUCIBILITY; STATISTICS;

ADAPTATION, PSYCHOLOGICAL; ADOLESCENT; CHILD; CHILD WELFARE; CHILD, PRESCHOOL; DOUBLE-BLIND METHOD; FEMALE; HUMANS; LONGITUDINAL STUDIES; MALE; NEOPLASMS; PARENT-CHILD RELATIONS; PARENTS; PSYCHOMETRICS; QUALITY OF LIFE; REPRODUCIBILITY OF RESULTS; STATISTICS AS TOPIC; STRESS, PSYCHOLOGICAL;

EID: 84863609759     PISSN: 09629343     EISSN: None     Source Type: Journal    
DOI: 10.1007/s11136-011-9986-4     Document Type: Review

References (28)

1. 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.
2. Cronbach, L. (1951). Coefficient alpha and the internal structure of test. Psychometrika, 16, 297-334. doi:10.1007/BF02310555.
3. 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.
4. 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. (Pubitemid 46650891)
5. 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.
6. 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.
7. 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.
8. 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. (Pubitemid 47622290)
9. 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.
10. 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. (Pubitemid 43852766)
11. 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. (Pubitemid 41279362)
12. Landis, J. R., & Koch, G. G. (1977). The measurement of observer agreement for categorical data. Biometrics, 33, 159-174. doi:10.2307/2529310. (Pubitemid 8054849)
13. 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. (Pubitemid 36724428)
14. 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.
15. Nunnally, J., & Bernstein, I. (1994). Psychometric theory. New York: McGraw-Hill, Inc.
16. 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.
17. Razzouk, B. I., Hord, J. D., Hockenberry, M., Hinds, P. S., Feusner, J., Williams, D., et al. (2006). Double-blind, placebocontrolled 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. (Pubitemid 46630530)
18. Sherifali, D., & Pinelli, J. (2007). Parent as proxy reporting: Implications and recommendations for quality of life research. Journal of Family Nursing, 13, 83-98.
19. 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.
20. 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.
21. 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. (Pubitemid 34270065)
22. 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. (Pubitemid 44973484)
23. 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 PedsQLTM 4.0 Generic Core Scales. Health and Quality of Life Outcomes, 5, 1.
24. 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 PedsQLTM 4.0 Generic Core Scales. Health and Quality of Life Outcomes, 5, 1-10.
25. Varni, J. W., Seid, M., Knight, T. S., Uzark, K., & Szer, I. S. (2002). The PedsQLTM 4.0 Generic Core Scales: Sensitivity, responsiveness, and impact on clinical decision-making. Journal of Behavioral Medicine, 25, 175-193. (Pubitemid 37490058)
26. 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.
27. 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. (Pubitemid 29448933)
28. 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. (Pubitemid 46050519)