Applying cognitive debriefing to pre-test patient-reported outcomes in older people with multiple sclerosis
- 366 Downloads
The aim of this study was to reduce respondent burden and decrease data errors in patient-reported outcomes (PROs) intended for a postal survey measuring health and lifestyle factors that may affect quality of life in older people with multiple sclerosis (MS).
Participants (n = 18) were recruited from a database of outpatient visits. Using the qualitative diagnostic method, cognitive debriefing, participants completed five standardized questionnaires; Frenchay Activities Index, Barthel Index, Simple Lifestyle Indicator Questionnaire, EuroQoL EQ-5D and Personal Resources Questionnaire 2000. PRO item issues and respondent behaviors such as skipping items were recorded. Data collection was an iterative process whereby difficulties experienced by 2–3 subjects were used to modify the survey for following respondents until data saturation was reached.
Most respondents had serious difficulties with at least one PRO item. Response errors fell into three main categories: (1) respondents did not read instructions and completed the item incorrectly, (2) respondents did not understand the question and required examples to clarify and (3) respondents felt that the pre-determined response options did not apply to them. PRO reformatting, minor modifications to item wording and addition of item examples improved precision and reduced respondent burden.
Our findings support the notion that methods such as cognitive debriefing help improve precision of self-reported measures in a special population such as ours.
KeywordsCognitive interviews Outcome measures Survey methods Chronic illness Disability
Frenchay Activities Index
Personal Resources Questionnaire version 2000
Quality of Life
Simple Lifestyle Indicator Questionnaire
Research support was provided by the Eastern Health Authority, the Memorial University Dr. W. Ingram Award and Faculty of Medicine Neurology Research Fund.
- 2.Coons, S. J., Gwaltney, C. J., Hays, R. D., Lundy, J. J., Sloan, J. A., Revicki, D. A., et al. (2009). Recommendations on evidence needed to support measurement equivalence between electronic and paper-based patient-reported outcome (PRO) measures: ISPOR ePRO good research practices task force report. Value in Health, 12(4), 419–429.CrossRefPubMedGoogle Scholar
- 3.United States Federal Drug Administration Agency. (2006). Guideline for Industry. Patient reported outcomes measures: Use in medical product development to support labelling claims. Federal Register.Google Scholar
- 6.O’Sullivan, S. B. (2007). Multiple sclerosis. In S. B. O’Sullivan & T. J. Schmitz (Eds.), Physical rehabilitation. Assessment and treatment. Philadelphia: F.A. Davis Company.Google Scholar
- 10.Clarke, H. H., & Schober, M. F. (1992). Asking questions and influencing answers. In J. M. Tanur (Ed.), Questions about questions Inquiries into the cognitive bases of surveys. New York: Russell Sage Foundation.Google Scholar
- 21.Ojanen, V., & Gogates, G. (2006). A briefing on cognitive debriefing. Good Clinical Practice Journal, 13(12), 25–29.Google Scholar