title: Sexual functioning along the cancer continuum: focus group results from the Patient-Reported Outcomes Measurement Information System (PROMIS®).
abstract: OBJECTIVE
  Cancer and treatments for cancer affect specific aspects of sexual functioning and intimacy; however, limited qualitative work has been done in diverse cancer populations. As part of an effort to improve measurement of self-reported sexual functioning, we explored the scope and importance of sexual functioning and intimacy to patients across cancer sites and along the continuum of care.
  
  
  METHODS
  We conducted 16 diagnosis- and sex-specific focus groups with patients recruited from the Duke University tumor registry and oncology/hematology clinics (N=109). A trained note taker produced field notes summarizing the discussions. An independent auditor verified field notes against written transcripts. The content of the discussions was analyzed for major themes by two independent coders.
  
  
  RESULTS
  Across all cancers, the most commonly discussed cancer- or treatment-related effects on sexual functioning and intimacy were fatigue, treatment-related hair loss, weight gain and organ loss or scarring. Additional barriers were unique to particular diagnoses, such as shortness of breath in lung cancer, gastrointestinal problems in colorectal cancers and incontinence in prostate cancer. Sexual functioning and intimacy were considered important to quality of life. While most effects of cancer were considered negative, many participants identified improvements to intimacy after cancer.
  
  
  CONCLUSIONS
  Overall evaluations of satisfaction with sex life did not always correspond to specific aspects of functioning (e.g. erectile dysfunction), presenting a challenge to researchers aiming to measure sexual functioning as an outcome. Health-care providers should not assume that level of sexual impairment determines sexual satisfaction and should explore cancer patients' sexual concerns directly.
authors.affiliation: Center for Clinical and Genetic Economics, Duke Clinical Research Institute, Duke University School of Medicine, Durham, NC 27715, USA. kathryn.flynn@duke.edu
authors.forename: Kathryn E
authors.initials: KE
authors.lastname: Flynn
authors.forename: Diana D
authors.initials: DD
authors.lastname: Jeffery
authors.forename: Francis J
authors.initials: FJ
authors.lastname: Keefe
authors.forename: Laura S
authors.initials: LS
authors.lastname: Porter
authors.forename: Rebecca A
authors.initials: RA
authors.lastname: Shelby
authors.forename: Maria R
authors.initials: MR
authors.lastname: Fawzy
authors.forename: Tracy K
authors.initials: TK
authors.lastname: Gosselin
authors.forename: Bryce B
authors.initials: BB
authors.lastname: Reeve
authors.forename: Kevin P
authors.initials: KP
authors.lastname: Weinfurt
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D005260:Female; D017144:Focus Groups; D006801:Humans; D007256:Information Systems; D008297:Male; D008875:Middle Aged; D009369:Neoplasms / Q000150:complications* / Q000503:physiopathology / Q000523:psychology; D017063:Outcome Assessment, Health Care; D017060:Patient Satisfaction; D011594:Psychometrics; D036301:Qualitative Research; D011788:Quality of Life / Q000523:psychology*; D012107:Research Design; D012725:Sexual Behavior / Q000502:physiology / Q000523:psychology*; D012735:Sexual Dysfunction, Physiological / Q000150:complications* / Q000503:physiopathology / Q000523:psychology; D011795:Surveys and Questionnaires