A knowledge translation challenge: clinical use of quality of life data from cancer clinical trials
Measurement and reporting of health-related quality of life (HRQL) data have evolved considerably over the past 10 years. Our goal was to identify the current barriers to, and enablers of, the effective translation of HRQL outcome data from randomized clinical trials by investigating physician attitudes, knowledge, and education needs.
We undertook a mixed qualitative and quantitative study of 33 oncologists’ attitudes and educational needs around the value, interpretation, and application of HRQL data from cancer clinical trials. The approach was designed to identify barriers and enablers relating to the characteristics of the knowledge itself, to the potential users of the knowledge, and to the environment in which the knowledge is used.
The majority of barriers and enablers identified were “second order”, i.e., related to the understandability and generalizability of the data, its presentation, its accessibility within the medical literature, and its relevance to specific patient populations.
Our results suggest knowledge translation (KT) of HRQL results would improve if the clinical trial HRQL data were easily accessible to clinicians, and presented in a comprehensible and clinically applicable format, which includes discussion of the relevance of the measurement domains and implications of the findings. We recommend that standards of clinical trial HRQL reporting be implemented in clinical journals.
KeywordsQuality of life Patient-reported outcomes HRQL Knowledge translation Randomized clinical trials
Quality of life
Health-related quality of life
Randomized clinical trial
We acknowledge the contributions of Dr. Andrea Bezjak, Dr. Joyce Nyhof-Young, Dr. Shayna Watson, Dr. Anna Wilkinson, and Dr. Deb Feldman-Stewart in discussions regarding the KT framework used in this study. This study was funded through the generous support of the Clare Nelson Bequest of the Kingston General Hospital.
- 1.Au, H.-J., Ringash, J., Brundage, M. D., Palmer, M., Richardson, H., & Meyer, R. M. (2010). Added value of health-related quality of life measurement in cancer clinical trials: A review of the experience of the NCIC CTG. Expert Review of Pharmacoeconomics & Outcomes Research, 10(2), 119–128.CrossRefGoogle Scholar
- 3.Osoba, D. (2005). The clinical value and meaning of health-related quality-of-life outcomes in oncology. In J. Lipscomb, C. C. Gotay, & C. Snyder (Eds.), Outcomes assessment in cancer (1st ed., pp. 386–405). Cambridge: Cambridge University Press.Google Scholar
- 4.Schwartz, C. E., & Sprangers, M. A. G. (2002). An introduction to quality of life assessment in oncology: The value of measuring patient-reported outcomes. American Journal of Management Care, 8(18 Suppl), S550–S559.Google Scholar
- 6.Guyatt, G. H., Sackett, D. L., & Cook, D. J. (1993). Users’ guides to the medical literature. II. How to use an article about therapy or prevention. A. Are the results of the study valid? Evidence-Based Medicine Working Group. Journal of the American Medical Association, 270(21), 2598–2601.PubMedCrossRefGoogle Scholar
- 7.Lomas, J. (1997). Improving research dissemination and uptake in the health sector: beyond the sound of one hand clapping. McMaster University Centre for Health Economics and Policy Analysis. Report No.: Policy Commentary C97-1.Google Scholar
- 9.Bezjak, A., Taylor, K. M., Ng, P., Macdonald, K., & DePetrillo, A. D. (1998). Quality-of-life information and clinical practice: The oncologist’s perspective. Cancer Prevention & Control, 2(5), 230–235.Google Scholar
- 13.Brundage, M. D., Bezjak, A., Ringash, J., & Fleming, S. (2005). Patterns of reporting quality of life data in randomized clinical trials. ISOQOL, San Francisco (abstract).Google Scholar
- 14.Sackett, D. L., Haynes, R. B., & Tugwell, P. (Eds.) (1985). How to get the most from and give the most to continuing medical education. In Clinical epidemiology: A basic science for clinical medicine, 1st ed. (pp. 331–352). Boston/Toronto: Little, Brown and Company.Google Scholar
- 17.Brundage, M., Osoba, D., Bezjak, A., Tu, D., Palmer, M., & Pater, J. (2007). “Lessons learned” in the assessment of health-related quality of life: Selected examples from the National Cancer Institute of Canada Clinical Trials Group. Journal of Clinical Oncology, 32, 5078–5081.CrossRefGoogle Scholar
- 18.Osoba, D., Dancey, J., Zee, B., Myles, J.,& Pater, J. (1996). Health-related quality-of-life studies of the National Cancer Institute of Canada Clinical Trials Group. Journal of the National Cancer Institute Monographs (20), 107–111. Google Scholar
- 19.Creswell, J. W. (2007). Qualitative inquiry & research design: Choosing among five approaches (2nd ed.). Thousand Oaks: Sage Publications.Google Scholar