title: How different terminology for ductal carcinoma in situ (DCIS) impacts women's concern and management preferences: A qualitative study.
abstract: OBJECTIVE
  There are increasing rates of mastectomy and bi-lateral mastectomy in women diagnosed with ductal carcinoma in situ (DCIS). To help women avoid decisions that lead to unnecessary aggressive treatments, there have been recent calls to remove the cancer terminology from descriptions of DCIS. We investigated how different proposed terminologies for DCIS affect women's perceived concern and management preferences.
  
  
  METHODS
  Qualitative study using semi-structured interviews with a community sample of 26 Australian women varying by education and cancer screening experience. Women responded to a hypothetical scenario using terminology with and without the cancer term to describe DCIS.
  
  
  RESULTS
  Among a sample of women with no experience of a DCIS diagnosis, a hypothetical scenario involving a diagnosis of DCIS elicited high concern regardless of the terminology used to describe it. Women generally exhibited stronger negative reactions when a cancer term was used to describe DCIS compared to a non-cancer term, and most preferred the diagnosis be given as a description of abnormal cells. Overall women expressed interest in watchful waiting for DCIS but displayed preferences for very frequent monitoring with this management approach.
  
  
  CONCLUSIONS
  Communicating a diagnosis of DCIS using terminology that does not include the cancer term was preferred by many women and may enable discussions about more conservative management options. However, women's preference for frequent monitoring during watchful waiting suggests women need more education and reassurance about this management approach.
authors.affiliation: Screening and Test Evaluation Program (STEP), Sydney School of Public Health, The University of Sydney, NSW 2006, Australia; Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), The University of Sydney, NSW 2006, Australia.
authors.forename: Brooke
authors.initials: B
authors.lastname: Nickel
authors.affiliation: Screening and Test Evaluation Program (STEP), Sydney School of Public Health, The University of Sydney, NSW 2006, Australia; Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), The University of Sydney, NSW 2006, Australia.
authors.forename: Alexandra
authors.initials: A
authors.lastname: Barratt
authors.affiliation: Screening and Test Evaluation Program (STEP), Sydney School of Public Health, The University of Sydney, NSW 2006, Australia; Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), The University of Sydney, NSW 2006, Australia.
authors.forename: Jolyn
authors.initials: J
authors.lastname: Hersch
authors.affiliation: Faculty of Health Sciences and Medicine, Bond University, QLD 4229, Australia.
authors.forename: Ray
authors.initials: R
authors.lastname: Moynihan
authors.affiliation: Screening and Test Evaluation Program (STEP), Sydney School of Public Health, The University of Sydney, NSW 2006, Australia.
authors.forename: Les
authors.initials: L
authors.lastname: Irwig
authors.affiliation: Screening and Test Evaluation Program (STEP), Sydney School of Public Health, The University of Sydney, NSW 2006, Australia; Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), The University of Sydney, NSW 2006, Australia. Electronic address: kirsten.mccaffery@sydney.edu.au.
authors.forename: Kirsten
authors.initials: K
authors.lastname: McCaffery
mesh_terms: D000328:Adult; D000368:Aged; D001943:Breast Neoplasms / Q000523:psychology* / Q000628:therapy; D002285:Carcinoma, Intraductal, Noninfiltrating / Q000523:psychology* / Q000628:therapy; D002755:Choice Behavior; D005239:Fear; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007407:Interviews as Topic; D008875:Middle Aged; D057240:Patient Preference / Q000523:psychology*; D036301:Qualitative Research; D009626:Terminology as Topic; D019564:Unnecessary Procedures; D057832:Watchful Waiting / Q000379:methods
keywords: Communication; Ductal carcinoma in situ; Overtreatment; Terminology; Treatment preferences; Watchful waiting