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Invited Paper C The use of cognitive interviewing techniques in quality of life and patient-reported outcomes assessment

Published online by Cambridge University Press:  18 December 2009

By
Gordon Willis Ph.D. ,
Bryce B. Reeve Ph.D.  and
Ivan Barofsky Ph.D.
Edited by
Joseph Lipscomb ,
Carolyn C. Gotay  and
Claire Snyder
Gordon Willis Ph.D.
Affiliation:
Cognitive Psychologist National Cancer Institute, Bethesda, MD
Bryce B. Reeve Ph.D.
Affiliation:
Psychometrician National Cancer Institute, Bethesda, MD
Ivan Barofsky Ph.D.
Affiliation:
The QOL Institute, East Sandwich, MA
Joseph Lipscomb
Affiliation:
National Cancer Institute, Bethesda, Maryland
Carolyn C. Gotay
Affiliation:
Cancer Research Center, Hawaii
Claire Snyder
Affiliation:
National Cancer Institute, Bethesda, Maryland
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Summary

As pointed out by multiple researchers, including several contributors to this volume, the designers of any health-related quality-of-life (HRQOL) questionnaire must consider the viewpoint of the individual who is asked to complete that instrument.– In particular, it is imperative that we understand the cognitive aspects of the response process — what the respondent understands the questions to be asking, his or her recall of relevant information (or failure to recall it), and other judgment and decision processes that influence the nature of the given answers that constitute our raw data. HRQOL instrument developers appear to vary widely in the extent to which they explicitly take into account respondent cognition, and several questionnaires have been either developed or evaluated through means that emphasize the respondent point of view or that empirically investigate key cognitive processes.,

However, the application of cognitive principles and techniques is inconsistent, often unsystematic, or not well documented. Ganz and Goodwin have suggested that instrument development is generally not a high priority in the peer-review process. The purpose of the current chapter is to suggest means for enhancing both practice and communication between researchers in this regard by: (a) advocating the explicit use of the cognitive interviewing method as a systematic means for studying cognition, and (b) describing the ways this technique can be used to inform several key design decisions that confront HRQOL questionnaire developers. This chapter is not intended to review extant quality-of-life instruments (see Chapter 3 by Erickson in this volume).

Type
Chapter
Information
Outcomes Assessment in Cancer
Measures, Methods and Applications
 , pp. 610 - 622
Publisher: Cambridge University Press
Print publication year: 2004

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References

McHorney, Cook, this volume, Invited Paper B
Zebrack, Cella, this volume, Chapter 11
Darby, this volume, Chapter 14
Cohen, S. R., Leis, A. (2002). What determines the quality of life of terminally ill cancer patients from their own perspective?Journal of Palliative Care 18(1):48–58Google ScholarPubMed
Ferrans, this volume, Chapter 2
Ganz, Goodwin, this volume, Chapter 5
Erickson, this volume, Chapter 3
Centers for Disease Control and Prevention (2000). Measuring Healthy Days. Atlanta, GA: CDC
Jobe, J. B., Mingay, D. J. (1991). Cognition and survey measurement: history and overviewApplied Cognitive Psychology 5:175–92CrossRefGoogle Scholar
Tourangeau, R., Rips L. J., Rasinski, K. (2000). The Psychology of Survey Response. Cambridge: Cambridge University Press
Willis, G. B. (1994). Cognitive Interviewing and Questionnaire Design: A Training Manual. Hyattsville, MD: National Center for Health Statistics: Cognitive Methods Staff, Working Paper No. 7
van der Veer, K., Hak, T., Jansen, H. (2002). The Three-Step Test-Interview (TSTI): An observational instrument for pre-testing self-completion questionnaires. Paper presented at the International Conference on Questionnaire Development, Evaluation, and Testing Methods (QDET), Charleston, SC
Jobe, J. (2003). Cognitive psychology and self reports: models and methodsQuality of Life Research, 12(3):219–27CrossRefGoogle ScholarPubMed
Lessler, J. T. (1995). Choosing questions that people can understand and answerMedical Care 33(4, Suppl.):AS203–8Google ScholarPubMed
Willis, G. B., Schechter, S. (1997). Evaluation of cognitive interviewing techniques: do the results generalize to the field?Bulletin de Methodologie Sociologique 55:40–66CrossRefGoogle Scholar
Mullin, P. A., Lohr, K. N., Bresnahan, B. W.et al. (2000). Applying cognitive design principles to formatting HRQOL instrumentsQuality of Life Research 9(1):13–27CrossRefGoogle ScholarPubMed
Harris-Kojetin, L. D., Fowler, F. J., Brown, J. A.et al. (1999). The use of cognitive testing to develop and evaluate CAHPS(R) 1.0 core survey itemsMedical Care 37(3, Suppl.): MS10–MS21CrossRefGoogle Scholar
Sehulster, J. R. (1994). Health and self: paths for exploring cognitive aspects underlying self-report of health status. In Proceedings of the 1993 NCHS Conference on the Cognitive Aspects of Self-Reported Health Status, ed. S. Schechter, pp. 89–105. Hyattsville, MD: National Center for Health Statistics, Cognitive Methods Staff Working Paper Series, No. 10
Fowler, F. J. (1995). Improving Survey Questions: Design and Evaluation. Thousand Oaks, CA: Sage
Aaronson, N. K., Ahmedzai, S., Bergman, B.et al. (1993). The European Organization for Research and Treatment of Cancer QLQ-C30: a quality of life instrument for use in international clinical trials in oncologyJournal of the National Cancer Institute 85(5):365–76CrossRefGoogle Scholar
Beatty, P., Schechter, S. (1998). Questionnaire Evaluation and Testing in Support of the Behavioral Risk Factor Surveillance System (BRFSS), 1992–1998. Hyattsville, MD: National Center for Health Statistics, Cognitive Methods Staff Working Paper No. 26
Schechter, S., Beatty, P., Willis, G. B. (1999). Asking survey respondents about health status: judgment and response issues. In Cognition, Aging, and Self-reports, ed. N. Schwarz, D. Park, B. Knauper, S. Sudman, pp. 265–83. Washington, DC: Psychology PressCrossRef
Fayers, P. M., Machin, D. (2000). Quality of Life: Assessment, Analysis and Interpretation. Chichester: John Wiley & Sons
Barofsky, I. (1996). Cognitive aspects of quality of life assessment. In Quality of Life and Pharmacoeconomics in Clinical Trials (2nd Edition), ed. B. Spilker, pp. 107–15. New York: Lippincott-Raven Press
Gotay, C. C. (1996). Trial-related quality of life: using quality-of-life assessment to distinguish among cancer therapiesJournal of the National Cancer Institute Monographs 20:1–6Google Scholar
Groenvold, M., Klee, M. C., Sprangers, M. A. G.et al. (1997). Validation of the EORTC QLQ-C30 Quality of Life Questionnaire through combined qualitative and quantitative assessment of patient-observer agreementJournal of Clinical Epidemiology 50(4):441–50CrossRefGoogle ScholarPubMed
Willis, G. B., Lessler, J. (1999). The BRFSS-QAS: A Guide for Systematically Evaluating Survey Question Wording. Research Triangle Park, NC: Research Triangle Institute
Litwin, M. S., McNaughton-Collins, M., Fowler, F. J.et al. (1999). The National Institutes of Health Chronic Prostatitis Symptom Index: development and validation of a new outcome measureJournal of Urology 162:369–75CrossRefGoogle ScholarPubMed
Willis, G. B. (1994). Results of NCHS Cognitive Testing: 1995 Year 2000 Objectives Questionnaire. Hyattsville, MD: National Center for Health Statistics
Lepore, S. J., Eton, D. T. (2000). Response shifts in prostate cancer patients: an evaluation of suppressor and buffer models. In Adaptation to Changing Health: Response Shifts in Quality-of-Life Research, ed. C. E. Schwartz, M. A. G. Sprangers, pp. 37–51. Washington, DC: American Psychological Association
Abeles, N. (1998). What Practitioners Should Know About Working with Older Adults. Washington, DC: American Psychological Association
Beatty, P. (2002). The dynamics of cognitive interviewing. Paper presented at the International Conference on Questionnaire Development, Evaluation, and Testing Methods (QDET), Charleston, SC
Zebrack, B. (2000). Quality of life of long-term survivors of leukemia and lymphomaJournal of Psychosocial Oncology 18(4):39–59CrossRefGoogle Scholar
US Bureau of the Census (1993). Protocol for Pretesting Demographic Surveys at the Census Bureau. Suitland, MD: U.S. Bureau of the Census
Esposito, J. L., Rothgeb, J. M. (1997). Evaluating survey data: making the transition from pretesting to quality assessment. In Survey Measurement and Process Quality, ed. L. Lyberg et al., pp. 541–71. New York, NY: John Wiley & SonsCrossRef
Reise, this volume, Chapter 21
Panter, A. T., Reeve, B. B. (2002). Assessing tobacco beliefs among youth using item response theory modelsDrug and Alcohol Dependence 68:521–39CrossRefGoogle ScholarPubMed
Lankenau, B. H., Hennessy, C. H., Moriarty, D. G. et al. (1995). Health-related Quality of Life: A New Approach to Measuring the Health Status of a Population. Paper presented at Ninth World Productivity Congress, Istanbul, Turkey
Aaronson, this volume, Chapter 20
Quittner, A. L., Sweeny, S., Watrous, M.et al. (2000). Translation and linguistic validation of a disease-specific quality of life measure for cystic fibrosisJournal of Pediatric Psychology 25(6):403–14CrossRefGoogle ScholarPubMed

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