How different terminology for ductal carcinoma in situ impacts women's concern and treatment preferences: A randomised comparison within a national community survey

Kirsten McCaffery, Brooke Nickel, Ray Moynihan, Jolyn Hersch, Armando Teixeira-Pinto, Les Irwig, Alexandra Barratt

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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.

Setting and participants: Community sample of Australian women (n=269) who spoke English as their main language at home.

Design: 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.

Original languageEnglish
Article number008094
Number of pages7
JournalBMJ Open
Volume5
Issue number11
DOIs
Publication statusPublished - 2015

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Carcinoma, Intraductal, Noninfiltrating
Terminology
Watchful Waiting
Therapeutics
Breast Neoplasms
Surveys and Questionnaires
Carcinoma in Situ
Neoplasms
Language

Cite this

McCaffery, Kirsten ; Nickel, Brooke ; Moynihan, Ray ; Hersch, Jolyn ; Teixeira-Pinto, Armando ; Irwig, Les ; Barratt, Alexandra. / How different terminology for ductal carcinoma in situ impacts women's concern and treatment preferences: A randomised comparison within a national community survey. In: BMJ Open. 2015 ; Vol. 5, No. 11.
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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.Setting and participants: Community sample of Australian women (n=269) who spoke English as their main language at home.Design: 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.",
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How different terminology for ductal carcinoma in situ impacts women's concern and treatment preferences: A randomised comparison within a national community survey. / McCaffery, Kirsten; Nickel, Brooke; Moynihan, Ray; Hersch, Jolyn; Teixeira-Pinto, Armando; Irwig, Les; Barratt, Alexandra.

In: BMJ Open, Vol. 5, No. 11, 008094, 2015.

Research output: Contribution to journalArticleResearchpeer-review

TY - JOUR

T1 - How different terminology for ductal carcinoma in situ impacts women's concern and treatment preferences: A randomised comparison within a national community survey

AU - McCaffery, Kirsten

AU - Nickel, Brooke

AU - Moynihan, Ray

AU - Hersch, Jolyn

AU - Teixeira-Pinto, Armando

AU - Irwig, Les

AU - Barratt, Alexandra

PY - 2015

Y1 - 2015

N2 - 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.Setting and participants: Community sample of Australian women (n=269) who spoke English as their main language at home.Design: 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.

AB - 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.Setting and participants: Community sample of Australian women (n=269) who spoke English as their main language at home.Design: 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.

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U2 - 10.1136/bmjopen-2015-008094

DO - 10.1136/bmjopen-2015-008094

M3 - Article

VL - 5

JO - BMJ Open

JF - BMJ Open

SN - 2044-6055

IS - 11

M1 - 008094

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