title: How different terminology for ductal carcinoma in situ impacts women's concern and treatment preferences: a randomised comparison within a national community survey.
abstract: OBJECTIVE
  There have been calls to remove 'carcinoma' from terminology for in situ cancers such as ductal carcinoma in situ (DCIS), to reduce overdiagnosis and overtreatment. We investigated the effect of describing DCIS as 'abnormal cells' versus 'pre-invasive breast cancer cells' on women's concern and treatment preferences.
  
  
  METHODS
  Community sample of Australian women (n=269) who spoke English as their main language at home.
  
  
  METHODS
  Randomised comparison within a community survey. Women considered a hypothetical scenario involving a diagnosis of DCIS described as either 'abnormal cells' (arm A) or 'pre-invasive breast cancer cells' (arm B). Within each arm, the initial description was followed by the alternative term and outcomes reassessed.
  
  
  RESULTS
  Women in both arms indicated high concern, but still indicated strong initial preferences for watchful waiting (64%). There were no differences in initial concern or preferences by trial arm. However, more women in arm A ('abnormal cells' first term) indicated they would feel more concerned if given the alternative term ('pre-invasive breast cancer cells') compared to women in arm B who received the terms in the opposite order (67% arm A vs 52% arm B would feel more concerned, p=0.001). More women in arm A also changed their preference towards treatment when the terminology was switched from 'abnormal cells' to 'pre-invasive breast cancer cells' compared to arm B. In arm A, 18% of women changed their preference to treatment while only 6% changed to watchful waiting (p=0.008). In contrast, there were no significant changes in treatment preference in arm B when the terminology was switched (9% vs 8% changed their stated preference).
  
  
  CONCLUSIONS
  In a hypothetical scenario, interest in watchful waiting for DCIS was high, and changing terminology impacted women's concern and treatment preferences. Removal of the cancer term from DCIS may assist in efforts towards reducing overtreatment.
authors.affiliation: Screening and Test Evaluation Program (STEP), Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), The University of Sydney, New South Wales, Australia.
authors.forename: Kirsten
authors.initials: K
authors.lastname: McCaffery
authors.affiliation: Screening and Test Evaluation Program (STEP), Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), The University of Sydney, New South Wales, Australia.
authors.forename: Brooke
authors.initials: B
authors.lastname: Nickel
authors.affiliation: Faculty of Health Sciences and Medicine, Bond University, Gold Coast, Queensland, 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, Sydney, New South Wales, Australia Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), The University of Sydney, New South Wales, Australia.
authors.forename: Jolyn
authors.initials: J
authors.lastname: Hersch
authors.affiliation: Screening and Test Evaluation Program (STEP), Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, Australia.
authors.forename: Armando
authors.initials: A
authors.lastname: Teixeira-Pinto
authors.affiliation: Screening and Test Evaluation Program (STEP), Sydney School of Public Health, The University of Sydney, Sydney, New South Wales, 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, Sydney, New South Wales, Australia Centre for Medical Psychology and Evidence-based Decision-making (CeMPED), The University of Sydney, New South Wales, Australia.
authors.forename: Alexandra
authors.initials: A
authors.lastname: Barratt
mesh_terms: D001294:Attitude to Health; D001315:Australia; D001943:Breast Neoplasms / Q000145:classification* / Q000523:psychology / Q000628:therapy*; D002285:Carcinoma, Intraductal, Noninfiltrating / Q000145:classification* / Q000523:psychology / Q000628:therapy*; D005260:Female; D006801:Humans; D000069342:Medical Overuse; D057240:Patient Preference; D011795:Surveys and Questionnaires; D009626:Terminology as Topic; D057832:Watchful Waiting
keywords: PUBLIC HEALTH