Improving patients' understanding of terms and phrases commonly used in self-reported measures of sexual function

Angel M. Alexander, Kathryn E. Flynn, Elizabeth A Hahn, Diana D. Jeffery, Francis J. Keefe, Bryce B. Reeve, Wesley Schultz, Jennifer Barsky Reese, Rebecca A. Shelby, Kevin P. Weinfurt

Research output: Contribution to journalArticle

6 Citations (Scopus)

Abstract

Introduction: There is a significant gap in research regarding the readability and comprehension of existing sexual function measures. Patient-reported outcome measures may use terms not well understood by respondents with low literacy. Aim: This study aims to test comprehension of words and phrases typically used in sexual function measures to improve validity for all individuals, including those with low literacy. Methods: We recruited 20 men and 28 women for cognitive interviews on version 2.0 of the Patient-Reported Outcome Measurement Information System® (PROMIS®) Sexual Function and Satisfaction measures. We assessed participants' reading level using the word reading subtest of the Wide Range Achievement Test. Sixteen participants were classified as having low literacy. Main Outcome Measures: In the first round of cognitive interviews, each survey item was reviewed by five or more people, at least two of whom had lower than a ninth-grade reading level (low literacy). Patient feedback was incorporated into a revised version of the items. In the second round of interviews, an additional three or more people (at least one with low literacy) reviewed each revised item. Results: Participants with low literacy had difficulty comprehending terms such as aroused, orgasm, erection, ejaculation, incontinence, and vaginal penetration. Women across a range of literacy levels had difficulty with clinical terms like labia and clitoris. We modified unclear terms to include parenthetical descriptors or slang equivalents, which generally improved comprehension. Conclusions: Common words and phrases used across measures of self-reported sexual function are not universally understood. Researchers should appreciate these misunderstandings as a potential source of error in studies using self-reported measures of sexual function. This study also provides evidence for the importance of including individuals with low literacy in cognitive pretesting during the measure development. Alexander AM, Flynn KE, Hahn EA, Jeffery DD, Keefe FJ, Reeve BB, Schultz W, Reese JB, Shelby RA, and Weinfurt KP. Improving patients' understanding of terms and phrases commonly used in self-reported measures of sexual function. J Sex Med 2014;11:1991-1998.

Original languageEnglish (US)
Pages (from-to)1991-1998
Number of pages8
JournalJournal of Sexual Medicine
Volume11
Issue number8
DOIs
StatePublished - Jan 1 2014

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Orgasm
Reading
Interviews
Clitoris
Ejaculation
Literacy
Information Systems
Research Design
Research Personnel
Outcome Assessment (Health Care)
Research
Surveys and Questionnaires
Patient Reported Outcome Measures

Keywords

  • Health literacy
  • Patient-reported outcome measures
  • Sexual function

ASJC Scopus subject areas

  • Reproductive Medicine
  • Obstetrics and Gynecology
  • Urology

Cite this

Alexander, A. M., Flynn, K. E., Hahn, E. A., Jeffery, D. D., Keefe, F. J., Reeve, B. B., ... Weinfurt, K. P. (2014). Improving patients' understanding of terms and phrases commonly used in self-reported measures of sexual function. Journal of Sexual Medicine, 11(8), 1991-1998. https://doi.org/10.1111/jsm.12599
Alexander, Angel M. ; Flynn, Kathryn E. ; Hahn, Elizabeth A ; Jeffery, Diana D. ; Keefe, Francis J. ; Reeve, Bryce B. ; Schultz, Wesley ; Reese, Jennifer Barsky ; Shelby, Rebecca A. ; Weinfurt, Kevin P. / Improving patients' understanding of terms and phrases commonly used in self-reported measures of sexual function. In: Journal of Sexual Medicine. 2014 ; Vol. 11, No. 8. pp. 1991-1998.
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Alexander, AM, Flynn, KE, Hahn, EA, Jeffery, DD, Keefe, FJ, Reeve, BB, Schultz, W, Reese, JB, Shelby, RA & Weinfurt, KP 2014, 'Improving patients' understanding of terms and phrases commonly used in self-reported measures of sexual function', Journal of Sexual Medicine, vol. 11, no. 8, pp. 1991-1998. https://doi.org/10.1111/jsm.12599

Improving patients' understanding of terms and phrases commonly used in self-reported measures of sexual function. / Alexander, Angel M.; Flynn, Kathryn E.; Hahn, Elizabeth A; Jeffery, Diana D.; Keefe, Francis J.; Reeve, Bryce B.; Schultz, Wesley; Reese, Jennifer Barsky; Shelby, Rebecca A.; Weinfurt, Kevin P.

In: Journal of Sexual Medicine, Vol. 11, No. 8, 01.01.2014, p. 1991-1998.

Research output: Contribution to journalArticle

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AU - Keefe, Francis J.

AU - Reeve, Bryce B.

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AU - Weinfurt, Kevin P.

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N2 - Introduction: There is a significant gap in research regarding the readability and comprehension of existing sexual function measures. Patient-reported outcome measures may use terms not well understood by respondents with low literacy. Aim: This study aims to test comprehension of words and phrases typically used in sexual function measures to improve validity for all individuals, including those with low literacy. Methods: We recruited 20 men and 28 women for cognitive interviews on version 2.0 of the Patient-Reported Outcome Measurement Information System® (PROMIS®) Sexual Function and Satisfaction measures. We assessed participants' reading level using the word reading subtest of the Wide Range Achievement Test. Sixteen participants were classified as having low literacy. Main Outcome Measures: In the first round of cognitive interviews, each survey item was reviewed by five or more people, at least two of whom had lower than a ninth-grade reading level (low literacy). Patient feedback was incorporated into a revised version of the items. In the second round of interviews, an additional three or more people (at least one with low literacy) reviewed each revised item. Results: Participants with low literacy had difficulty comprehending terms such as aroused, orgasm, erection, ejaculation, incontinence, and vaginal penetration. Women across a range of literacy levels had difficulty with clinical terms like labia and clitoris. We modified unclear terms to include parenthetical descriptors or slang equivalents, which generally improved comprehension. Conclusions: Common words and phrases used across measures of self-reported sexual function are not universally understood. Researchers should appreciate these misunderstandings as a potential source of error in studies using self-reported measures of sexual function. This study also provides evidence for the importance of including individuals with low literacy in cognitive pretesting during the measure development. Alexander AM, Flynn KE, Hahn EA, Jeffery DD, Keefe FJ, Reeve BB, Schultz W, Reese JB, Shelby RA, and Weinfurt KP. Improving patients' understanding of terms and phrases commonly used in self-reported measures of sexual function. J Sex Med 2014;11:1991-1998.

AB - Introduction: There is a significant gap in research regarding the readability and comprehension of existing sexual function measures. Patient-reported outcome measures may use terms not well understood by respondents with low literacy. Aim: This study aims to test comprehension of words and phrases typically used in sexual function measures to improve validity for all individuals, including those with low literacy. Methods: We recruited 20 men and 28 women for cognitive interviews on version 2.0 of the Patient-Reported Outcome Measurement Information System® (PROMIS®) Sexual Function and Satisfaction measures. We assessed participants' reading level using the word reading subtest of the Wide Range Achievement Test. Sixteen participants were classified as having low literacy. Main Outcome Measures: In the first round of cognitive interviews, each survey item was reviewed by five or more people, at least two of whom had lower than a ninth-grade reading level (low literacy). Patient feedback was incorporated into a revised version of the items. In the second round of interviews, an additional three or more people (at least one with low literacy) reviewed each revised item. Results: Participants with low literacy had difficulty comprehending terms such as aroused, orgasm, erection, ejaculation, incontinence, and vaginal penetration. Women across a range of literacy levels had difficulty with clinical terms like labia and clitoris. We modified unclear terms to include parenthetical descriptors or slang equivalents, which generally improved comprehension. Conclusions: Common words and phrases used across measures of self-reported sexual function are not universally understood. Researchers should appreciate these misunderstandings as a potential source of error in studies using self-reported measures of sexual function. This study also provides evidence for the importance of including individuals with low literacy in cognitive pretesting during the measure development. Alexander AM, Flynn KE, Hahn EA, Jeffery DD, Keefe FJ, Reeve BB, Schultz W, Reese JB, Shelby RA, and Weinfurt KP. Improving patients' understanding of terms and phrases commonly used in self-reported measures of sexual function. J Sex Med 2014;11:1991-1998.

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