Article

Exploring the Response Shift Phenomenon in Childhood Patients With Cancer and Its Effect on Health-Related Quality of Life

Aeltsje Brinksma

Wim J. E. Tissing

Esther Sulkers

Willem A. Kamps

Petrie F. Roodbol

Robbert Sanderman

cancer, child, adolescent, parents, quality of life, self-report
ONF 2013, 41(1), 48-56. DOI: 10.1188/14.ONF.41-01AP

Purpose/Objectives: To explore the response shift phenomenon in pediatric patients with cancer and to determine its effects on ratings of health-related quality of life (HRQOL).

Design: Retrospective pre- and post-test design.

Setting: Pediatric oncology department in the northern part of the Netherlands.

Sample: 37 children newly diagnosed with cancer and 80 parents.

Methods: The then-test method was used to determine response shift. HRQOL was assessed within two weeks postdiagnosis (pretest) and three months later (post-test) using both child and parent reports of PedsQL and Cantril's ladder. The post-test and then-test were administered concurrently.

Main Research Variables: Overall and multidimensional HRQOL.

Findings: Scores on Cantril's then-test were lower than the pretest in both child and parent reports, indicating response shift in the assessment of overall HRQOL. Children experienced a greater response shift than parents. No differences were found between the PedsQL then- and pretests.

Conclusions: Both child- and parent-report ratings of overall HRQOL were affected by response shift, resulting in an underestimation of the improvement in overall HRQOL between diagnosis and three months postdiagnosis. No response shift was demonstrated in the more specific domains of HRQOL (PedsQL).

Implications for Nursing: Knowledge of the response shift phenomenon helps nurses to better interpret the outcomes of HRQOL. The use of the PedsQL instrument is recommended in future studies that aim to demonstrate changes in HRQOL.

Jump to a section

    References

    Adang, E.M., Kootstra, G., Engel, G.L., van Hooff, J.P., & Merckelbach, H.L. (1998). Do retrospective and prospective quality-of-life assessments differ for pancreas-kidney transplant recipients? Transplant International, 11, 11-15.
    Ahmed, S., Mayo, N.E., Wood-Dauphinee, S., Hanley, J.A., & Cohen, S.R. (2004). Response shift influenced estimates of change in health-related quality of life post-stroke. Journal of Clinical Epidemiology, 57, 561-570. doi:10.1016/j.jclinepi.2003.11.003
    Bernhard, J., Hurny, C., Maibach, R., Herrmann, R., & Laffer, U. (1999). Quality of life as subjective experience: Reframing of perception in patients with colon cancer undergoing radical resection with or without adjuvant chemotherapy. Swiss Group for Clinical Cancer Research (SAKK). Annals of Oncology, 10, 775-782.
    Bradlyn, A.S., Ritchey, A.K., Harris, C.V., Moore, I.M., O'Brien, R.T., Parsons, S.K., … Pollock, B.H. (1996). Quality-of-life research in pediatric oncology. Research methods and barriers. Cancer, 78, 1333-1339.
    Breetvelt, I.S., & Van Dam, F.S. (1991). Underreporting by cancer-patients—The case of response-shift. Social Science and Medicine, 32, 981-987.
    Cantril, H. (1965). The pattern of human concerns. New Brunswick, NJ: Rutgers University Press.
    Chang, P.C., & Yeh, C.H. (2005). Agreement between child self-report and parent proxy-report to evaluate quality of life in children with cancer. Psycho-Oncology, 14, 125-134.
    Cohen, J. (1992). A power primer. Psychological Bulletin, 112, 155-159.
    Collins, J.J., Byrnes, M.E., Dunkel, I.J., Lapin, J., Nadel, T., Thaler, H.T., … Portenoy, R.K. (2000). The measurement of symptoms in children with cancer. Journal of Pain and Symptom Management, 19, 363-377.
    Collins, J.J., Devine, T.D., Dick, G.S., Johnson, E.A., Kilham, H.A., Pinkerton, C.R., … Portenoy, R.K. (2002). The measurement of symptoms in young children with cancer: The validation of the memorial symptom assessment scale in children aged 7-12. Journal of Pain and Symptom Management, 23, 10-16.
    Costello, E.J., Angold, A., March, J., & Fairbank, J. (1998). Life events and post-traumatic stress: The development of a new measure for children and adolescents. Psychological Medicine, 28, 1275-1288.
    Davis, E., Nicolas, C., Waters, E., Cook, K., Gibbs, L., Gosch, A., & Ravens-Sieberer, U. (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. doi:10.1007/s11136-007-9187-3
    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, 347-357.
    Hinds, P.S. (2010). Progress in quality of life in children and adolescents with cancer. Seminars in Oncology Nursing, 26, 18-25. doi:10.1016/j.soncn.2009.11.004
    Howard, G.S., Ralph, K.M., Gulanick, N.A., Maxwell, S.E., Nance, D.W., & Gerber, S.K. (1979). Internal invalidity in pretest-posttest self-report evaluations and a re-evaluation of retrospective pretests. Applied Psychological Measurement, 3, 1-23.
    Jansen, S.J., Stiggelbout, A.M., Nooij, M.A., Noordijk, E.M., & Kievit, J. (2000). Response shift in quality-of-life measurement in early-stage breast cancer patients undergoing radiotherapy. Quality of Life Research, 9, 603-615.
    Klaassen, R.J., Krahn, M., Gaboury, I., Hughes, J., Anderson, R., Grundy, P., … Cappelli, M. (2010). Evaluating the ability to detect change of health-related quality of life in children with Hodgkin disease. Cancer, 116, 1608-1614. doi:10.1002/cncr.24883
    Landolt, M.A., Vollrath, M., Niggli, F.K., Gnehm, H.E., & Sennhauser, F.H. (2006). Health-related quality of life in children with newly diagnosed cancer: A one-year follow-up study. Health and Quality of Life Outcomes, 4, 63. doi:10.1186/1477-7525-4-63
    Lansky, S.B., List, M.A., Lansky, L.L., Ritter-Sterr, C., & Miller, D.R. (1987). The measurement of performance in childhood cancer patients. Cancer, 60, 1651-1656.
    Levi, R.B., & Drotar, D. (1999). Health-related quality of life in childhood cancer: Discrepancy in parent-child reports. International Journal of Cancer, 12(Suppl.), 58-64.
    Magal-Vardi, O., Laor, N., Toren, A., Strauss, L., Wolmer, L., Bielorai, B., … Toren, P. (2004). Psychiatric morbidity and quality of life in children with malignancies and their parents. Journal of Nervous and Mental Disease, 192, 872-875.
    Miedema, B., Hamilton, R., Fortin, P., Easley, J., & Matthews, M. (2010). "You can only take so much, and it took everything out of me:" Coping strategies used by parents of children with cancer. Palliative and Supportive Care, 8, 197-206. doi:10.1017/S1478951510000015
    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, 12(Suppl.), 46-51.
    Penn, A., Lowis, S.P., Hunt, L.P., Shortman, R.I., Stevens, M.C., McCarter, R.L., … Sharples, P.M. (2008). Health related quality of life in the first year after diagnosis in children with brain tumours compared with matched healthy controls: A prospective longitudinal study. European Journal of Cancer, 44, 1243-1252. doi:10.1016/j.ejca.2007.09.015
    Phipps, S. (2007). Adaptive style in children with cancer: Implications for a positive psychology approach. Journal of Pediatric Psychology, 32, 1055-1066. doi:10.1093/jpepsy/jsm060
    Postulart, D., & Adang, E.M. (2000). Response shift and adaptation in chronically ill patients. Medical Decision Making, 20, 186-193.
    Rebok, G., Riley, A., Forrest, C., Starfield, B., Green, B., Robertson, J., & Tambor, E. (2001). Elementary school-aged children's reports of their health: A cognitive interviewing study. Quality of Life Research, 10, 59-70.
    Rees, J., Clarke, M.G., Waldron, D., O'Boyle, C., Ewings, P., & MacDonagh, R.P. (2005). The measurement of response shift in patients with advanced prostate cancer and their partners. Health and Quality of Life Outcomes, 3, 21. doi:10.1186/1477-7525-3-21
    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, 2267-2274.
    Schwartz, C.E., Bode, R., Repucci, N., Becker, J., Sprangers, M.A., & Fayers, P.M. (2006). The clinical significance of adaptation to changing health: A meta-analysis of response shift. Quality of Life Research, 15, 1533-1550.
    Schwartz, C.E., Feinberg, R.G., Jilinskaia, E., & Applegate, J.C. (1999). An evaluation of a psychosocial intervention for survivors of childhood cancer: Paradoxical effects of response shift over time. Psycho-Oncology, 8, 344-354.
    Schwartz, C.E., & Sprangers, M.A. (1999). Methodological approaches for assessing response shift in longitudinal health-related quality-of-life research. Social Science and Medicine, 48, 1531-1548.
    Schwartz, C.E., & Sprangers, M.A. (2010). Guidelines for improving the stringency of response shift research using the then-test. Quality of Life Research, 19, 455-464. doi:10.1007/s11136-010-9585-9
    Shankar, S., Robison, L., Jenney, M.E., Rockwood, T.H., Wu, E., Feusner, J., … Bhatia, S. (2005). Health-related quality of life in young survivors of childhood cancer using the Minneapolis-Manchester Quality of Life-Youth Form. Pediatrics, 115, 435-442.
    Sprangers, M.A., & Schwartz, C.E. (1999). Integrating response shift into health-related quality-of-life research: A theoretical model. Social Science and Medicine, 48, 1507-1515.
    Sprangers, M.A., Van Dam, F.S., Broersen, J., Lodder, L., Wever, L., Visser, M.R., … Smets, E.M. (1999). Revealing response shift in longitudinal research on fatigue—The use of the then-test approach. Acta Oncologica, 38, 709-718.
    Tavernier, S.S., Beck, S.L., Clayton, M.F., Pett, M.A., & Berry, D.L. (2011). Validity of the patient generated index as a quality-of-life measure in radiation oncology. Oncology Nursing Forum, 38, 319-329. doi:10.1188/11.ONF.319-329
    Timmerman, A.A., Anteunis, L.J., & Meesters, C.M. (2003). Response-shift bias and parent-reported quality of life in children with otitis media. Archives of Otolaryngology-Head and Neck Surgery, 129, 987-991.
    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, 661-667.
    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.
    Varni, J.W., Limbers, C.A., & Burwinkle, T.M. (2007a). 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. Retrieved from http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1769360 http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1769360
    Varni, J.W., Limbers, C.A., & Burwinkle, T.M. (2007b). 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. Retrieved from http://www.hqlo.com/content/5/1/2 http://www.hqlo.com/content/5/1/2
    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 populations. Medical Care, 39, 800-812.
    Visser, M.R., Oort, F.J., & Sprangers, M.A. (2005). Methods to detect response shift in quality of life data: A convergent validity study. Quality of Life Research, 14, 629-639.
    Visser, M.R., Smets, E.M., Sprangers, M.A., & de Haes, H.J. (2000). How response shift may affect the measurement of change in fatigue. Journal of Pain and Symptom Management, 20, 12-18.