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Using cognitive interviews to evaluate items for measuring sexual functioning across cancer populations: improvements and remaining challenges

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Abstract

Purpose

One goal of the Patient-Reported Outcomes Measurement Information System™ (PROMIS™) is to develop a measure of sexual functioning that broadens the definition of sexual activity and incorporates items that reflect constructs identified as important by patients with cancer. We describe how cognitive interviews improved the quality of the items and discuss remaining challenges to assessing sexual functioning in research with cancer populations.

Methods

We conducted 39 cognitive interviews of patients with cancer and survivors on the topic of sexual experience. Each of the 83 candidate items was seen by 5–24 participants. Participants included both men and women and varied by cancer type, treatment trajectory, race, and literacy level. Significantly revised items were retested in subsequent interviews.

Results

Cognitive interviews provided useful feedback about the relevance, sensitivity, appropriateness, and clarity of the items. Participants identified broad terms (e.g., “sex life”) to assess sexual experience and exposed the challenges of measuring sexual functioning consistently, considering both adjusted and unadjusted sexual experiences.

Conclusions

Cognitive interviews were critical for item refinement in the development of the PROMIS measure of sexual function. Efforts are underway to validate the measure in larger cancer populations.

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References

  1. Horner, M. J., Ries, L. A. G., Krapcho, M., Neyman, N., Aminou, R., Howlader, N., et al. (Eds) SEER Cancer Facts Sheet. National Cancer Institute. Bethesda, MD (based on November 2008 data submission). http://seer.cancer.gov/statfacts/html/all.html.

  2. Committee on Cancer Survivorship. (2006). Improving care and quality of life, institute of medicine. Washington, DC: National Academies Press.

    Google Scholar 

  3. Bober, S. L., & Park, E. R. (2008). Let’s talk about sex and cancer. Boston Globe, A11.

  4. Schover, L. R. (2005). Sexuality and fertility after cancer. Hematology (American Society of Hematology Education Program, 52, 3–527.

    Google Scholar 

  5. Krebs, L. U. (2008). Sexual assessment in cancer care: Concepts, methods, and strategies for success. Seminars in Oncology Nursing, 24(2), 80–90.

    Article  PubMed  Google Scholar 

  6. National Cancer Institute. (2004). Sexuality and reproductive issues (PDQ®). Version date 05/20/2009. Available at: http://www.cancer.gov/cancertopics/pdq/supportivecare/sexuality/healthprofessional.

  7. Hordern, A., & Street, A. (2007). Communicating about patient sexuality and intimacy after cancer: Mismatched expectations and unmet needs. Medical Journal of Australia, 186(5), 224–227.

    PubMed  Google Scholar 

  8. Jeffery, D. D., Tzeng, J. P., Keefe, F. J., Porter, L. S., Hahn, E. A., Flynn, K. E., et al. (2009). Initial report of the cancer patient-reported outcomes measurement information system (PROMIS) sexual function committee: Review of sexual function measures and domains used in oncology. Cancer, 115(6), 1142–1153.

    Article  PubMed  Google Scholar 

  9. Arrington, R., CoFrancesco, J., & Wu, A. W. (2004). Questionnaires to measure sexual quality of life. Quality of Life Research, 13(10), 1643–1658.

    Article  PubMed  Google Scholar 

  10. Reeve, B. B., Hays, R. D., Bjorner, J. B., Cook, K. F., Crane, P. K., Teresi, J. A., et al. (2007). Psychometric evaluation and calibration of health-related quality of life item banks: Plans for the patient-reported outcomes measurement information system (PROMIS). Medical Care, 45(5 Suppl 1), S22–S31.

    Google Scholar 

  11. Garcia, S. F., Cella, D., Clauser, S. B., Flynn, K. E., Lad, T., Lai, J. S., et al. (2007). Standardizing patient-reported outcomes assessment in cancer clinical trials: A patient-reported outcomes measurement information system initiative. Journal of Clinical Oncology, 25(32), 5106–5112.

    Article  PubMed  Google Scholar 

  12. DeWalt, D. A., Rothrock, N., Yount, S., Stone, A. A., & PROMIS Cooperative Group. (2007). Evaluation of item candidates: The Promis qualitative item review. Medical Care, 45(5), S12–S21.

    Article  PubMed  Google Scholar 

  13. Masters, W. H., & Johnson, V. E. (1966). Human sexual response. Toronto, NY: Bantam.

    Google Scholar 

  14. Flynn, K. E., Tzeng, J., Jeffery, D. D., Reeve, B. B., Weinfurt, K. P., & The PROMIS Sexual Function Domain Subcommittee. (2007). Conceptualizations of sexual functioning and intimacy among cancer sufferers and survivors. Psychooncology, 16(S2), S135–S136.

    Google Scholar 

  15. Forsyth, B. H., & Lessler, J. T. (1991). Cognitive laboratory methods: A taxonomy. In P. P. Biemer, L. E. Lyberg, N. A. Mathiowetz, & S. Sudman (Eds.), Measurement errors in surveys (pp. 393–418). New York: Wiley.

    Google Scholar 

  16. Willis, G. B. (2005). Cognitive interviewing. Thousand Oaks, CA: Sage.

    Google Scholar 

  17. McColl, E., Meadows, K., & Barofsky, I. (2003). Cognitive aspects of survey methodology and quality of life assessment. Quality of Life Research, 12(3), 217–218.

    Article  PubMed  Google Scholar 

  18. Willis, G. B., Reeve, B. B., & Barofsky, I. (2005). The use of cognitive interviewing techniques in quality of life and patient-reported outcomes assessment. In J. Lipscomb, C. C. Gotay, & C. Snyder (Eds.), Outcomes assessment in cancer: Measures, methods, and applications (pp. 610–623). New York: Cambridge University Press.

    Google Scholar 

  19. Broderick, J. E., Schwartz, J. E., Vikingstad, G., Pribbernow, M., Grossman, S., & Stone, A. A. (2008). The accuracy of pain and fatigue items across different reporting periods. Pain, 139(1), 146–157.

    Article  PubMed  Google Scholar 

  20. Rosen, R. C., Riley, A., Wagner, G., Osterloh, I. H., Kirkpatrick, J., & Mishra, A. (1997). The international index of erectile function (IIEF): A multidimensional scale for assessment of erectile dysfunction. Urology, 49(6), 822–830.

    Article  PubMed  CAS  Google Scholar 

  21. Litwin, M. S., Hays, R. D., Fink, A., Ganz, P. A., Leake, B., & Brook, R. H. (1998). The UCLA prostate cancer index: Development, reliability, and validity of a health-related quality of life measure. Medical Care, 36(7), 1002–1012.

    Article  PubMed  CAS  Google Scholar 

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Acknowledgments

Funding/Support: This work was funded by grant U01AR052186 from the National Institute of Arthritis and Musculoskeletal and Skin Diseases, with additional support from the National Cancer Institute. Disclaimer: The content of this paper is solely the responsibility of the authors and does not necessarily represent the official views of the National Institute of Arthritis and Musculoskeletal and Skin Diseases, the National Cancer Institute, or the National Institutes of Health. PROMIS Sexual Function Domain Committee: Maria R. Fawzy, Kathryn E. Flynn, Tracey L. Krupski, Laura S. Porter, Rebecca Shelby, and Kevin P. Weinfurt (Duke University); Elizabeth A. Hahn (Northwestern University); and Diana D. Jeffery and Bryce B. Reeve (National Cancer Institute). Additional Contributions: We thank Elizabeth Clipp of Duke University and Wendy Demark-Wahnefried of MD Anderson Cancer Center for assistance with PROMIS grant development; Denise Snyder of Duke University for assistance with data collection; Justin Levens and Chantelle Hardy of Duke University for conducting the cognitive interviews; Janice Tzeng of Duke University for research assistance; and Damon Seils of Duke University for editorial assistance and manuscript preparation.

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Authors and Affiliations

  1. Center for Clinical and Genetic Economics, Duke Clinical Research Institute, PO Box 17969, Durham, NC, 27715, USA

    Alice K. Fortune-Greeley, Kathryn E. Flynn & Kevin P. Weinfurt

  2. Department of Psychiatry and Behavioral Sciences, Duke University, School of Medicine, Durham, NC, USA

    Kathryn E. Flynn, Francis J. Keefe & Kevin P. Weinfurt

  3. Duke University School of Nursing, Durham, NC, USA

    Megan S. Williams

  4. Division of Cancer Control and Population Sciences, National Cancer Institute, Bethesda, MD, USA

    Diana D. Jeffery, Bryce B. Reeve & Gordon B. Willis

Authors
  1. Alice K. Fortune-Greeley
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  2. Kathryn E. Flynn
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  3. Diana D. Jeffery
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  4. Megan S. Williams
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  5. Francis J. Keefe
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  6. Bryce B. Reeve
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  7. Gordon B. Willis
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  8. Kevin P. Weinfurt
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Corresponding author

Correspondence to Kevin P. Weinfurt.

Additional information

For the PROMIS Sexual Function Domain Committee.

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Fortune-Greeley, A.K., Flynn, K.E., Jeffery, D.D. et al. Using cognitive interviews to evaluate items for measuring sexual functioning across cancer populations: improvements and remaining challenges. Qual Life Res 18, 1085–1093 (2009). https://doi.org/10.1007/s11136-009-9523-x

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  • DOI: https://doi.org/10.1007/s11136-009-9523-x

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