title: Improving patients' understanding of terms and phrases commonly used in self-reported measures of sexual function.
abstract: BACKGROUND
  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.
  
  
  OBJECTIVE
  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.
  
  
  METHODS
  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.
authors.affiliation: Duke Clinical Research Institute, Duke University School of Medicine, Durham, NC, USA.
authors.forename: Angel M
authors.initials: AM
authors.lastname: Alexander
authors.forename: Kathryn E
authors.initials: KE
authors.lastname: Flynn
authors.forename: Elizabeth A
authors.initials: EA
authors.lastname: Hahn
authors.forename: Diana D
authors.initials: DD
authors.lastname: Jeffery
authors.forename: Francis J
authors.initials: FJ
authors.lastname: Keefe
authors.forename: Bryce B
authors.initials: BB
authors.lastname: Reeve
authors.forename: Wesley
authors.initials: W
authors.lastname: Schultz
authors.forename: Jennifer Barsky
authors.initials: JB
authors.lastname: Reese
authors.forename: Rebecca A
authors.initials: RA
authors.lastname: Shelby
authors.forename: Kevin P
authors.initials: KP
authors.lastname: Weinfurt
mesh_terms: D000328:Adult; D000368:Aged; D032882:Comprehension; D003258:Consumer Behavior; D004522:Educational Status; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D010353:Patient Education as Topic; D057566:Self Report; D044347:Sexology; D009626:Terminology as Topic; D055815:Young Adult
keywords: Health Literacy; Patient-Reported Outcome Measures; Sexual Function