Invited Paper C The use of cognitive interviewing techniques in quality of life and patient-reported outcomes assessment  pp. 610-622

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

By Gordon Ph.D. Willis, Bryce B. Ph.D. Reeve and Ivan Ph.D. Barofsky

Image View Previous Chapter Next Chapter



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).

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 oncology Journal of the National Cancer Institute 85(5):365–76
Aaronson, this volume, Chapter 20
Abeles, N. (1998). What Practitioners Should Know About Working with Older Adults. Washington, DC: American Psychological Association
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
Beatty, P. (2002). The dynamics of cognitive interviewing. Paper presented at the International Conference on Questionnaire Development, Evaluation, and Testing Methods (QDET), Charleston, SC
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
Centers for Disease Control and Prevention (2000). Measuring Healthy Days. Atlanta, GA: CDC
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):48–58
Darby, this volume, Chapter 14
Erickson, this volume, Chapter 3
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 & Sons
Fayers, P. M., Machin, D. (2000). Quality of Life: Assessment, Analysis and Interpretation. Chichester: John Wiley & Sons
Ferrans, this volume, Chapter 2
Fowler, F. J. (1995). Improving Survey Questions: Design and Evaluation. Thousand Oaks, CA: Sage
Ganz, Goodwin, this volume, Chapter 5
Gotay, C. C. (1996). Trial-related quality of life: using quality-of-life assessment to distinguish among cancer therapies Journal of the National Cancer Institute Monographs 20:1–6
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 agreement Journal of Clinical Epidemiology 50(4):441–50
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 items Medical Care 37(3, Suppl.): MS10–MS21
Jobe, J. (2003). Cognitive psychology and self reports: models and methods Quality of Life Research, 12(3):219–27
Jobe, J. B., Mingay, D. J. (1991). Cognition and survey measurement: history and overview Applied Cognitive Psychology 5:175–92
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
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
Lessler, J. T. (1995). Choosing questions that people can understand and answer Medical Care 33(4, Suppl.):AS203–8
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 measure Journal of Urology 162:369–75
McHorney, Cook, this volume, Invited Paper B
Mullin, P. A., Lohr, K. N., Bresnahan, B. W. et al. (2000). Applying cognitive design principles to formatting HRQOL instruments Quality of Life Research 9(1):13–27
Panter, A. T., Reeve, B. B. (2002). Assessing tobacco beliefs among youth using item response theory models Drug and Alcohol Dependence 68:521–39
Quittner, A. L., Sweeny, S., Watrous, M. et al. (2000). Translation and linguistic validation of a disease-specific quality of life measure for cystic fibrosis Journal of Pediatric Psychology 25(6):403–14
Reise, this volume, Chapter 21
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 Press
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
Tourangeau, R., Rips L. J., Rasinski, K. (2000). The Psychology of Survey Response. Cambridge: Cambridge University Press
US Bureau of the Census (1993). Protocol for Pretesting Demographic Surveys at the Census Bureau. Suitland, MD: U.S. Bureau of the Census
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
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
Willis, G. B. (1994). Results of NCHS Cognitive Testing: 1995 Year 2000 Objectives Questionnaire. Hyattsville, MD: National Center for Health Statistics
Willis, G. B., Lessler, J. (1999). The BRFSS-QAS: A Guide for Systematically Evaluating Survey Question Wording. Research Triangle Park, NC: Research Triangle Institute
Willis, G. B., Schechter, S. (1997). Evaluation of cognitive interviewing techniques: do the results generalize to the field? Bulletin de Methodologie Sociologique 55:40–66
Zebrack, B. (2000). Quality of life of long-term survivors of leukemia and lymphoma Journal of Psychosocial Oncology 18(4):39–59
Zebrack, Cella, this volume, Chapter 11