Using cognitive interviews to evaluate items for measuring sexual functioning across cancer populations: improvements and remaining challenges
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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.
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.
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.
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.
KeywordsClinical trials as topic Neoplasms Patient satisfaction Psychometrics Quality indicators Quality of life Sexuality Treatment outcome
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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