Brooke Nickel1, Alexandra Barratt1, Jolyn Hersch1, Ray Moynihan2, Les Irwig3, Kirsten McCaffery4. 1. 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. 2. Faculty of Health Sciences and Medicine, Bond University, QLD 4229, Australia. 3. Screening and Test Evaluation Program (STEP), Sydney School of Public Health, The University of Sydney, NSW 2006, Australia. 4. 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.
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. MATERIALS AND 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. CONCLUSION: 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.
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. MATERIALS AND 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. CONCLUSION: 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: Shoshana M Rosenberg; Jennifer M Gierisch; Anna C Revette; Carol L Lowenstein; Elizabeth S Frank; Deborah E Collyar; Thomas Lynch; Alastair M Thompson; Ann H Partridge; E Shelley Hwang Journal: Cancer Date: 2022-02-22 Impact factor: 6.921
Authors: Brooke Nickel; Alexandra Barratt; Kevin McGeechan; Juan P Brito; Ray Moynihan; Kirsten Howard; Kirsten McCaffery Journal: JAMA Otolaryngol Head Neck Surg Date: 2018-10-01 Impact factor: 6.223
Authors: Claire Kim; Frances C Wright; Nicole J Look Hong; Gary Groot; Lucy Helyer; Pamela Meiers; May Lynn Quan; Robin Urquhart; Rebecca Warburton; Anna R Gagliardi Journal: PLoS One Date: 2018-02-05 Impact factor: 3.240
Authors: Claire Kim; Laurel Liang; Frances C Wright; Nicole J Look Hong; Gary Groot; Lucy Helyer; Pamela Meiers; May Lynn Quan; Robin Urquhart; Rebecca Warburton; Anna R Gagliardi Journal: Breast Cancer Res Treat Date: 2017-12-23 Impact factor: 4.872
Authors: Amanda J Chorley; Yasemin Hirst; Charlotte Vrinten; Christian von Wagner; Jane Wardle; Jo Waller Journal: J Med Screen Date: 2017-05-22 Impact factor: 2.136
Authors: Brooke Nickel; Caitlin Semsarian; Ray Moynihan; Alexandra Barratt; Susan Jordan; Donald McLeod; Juan P Brito; Kirsten McCaffery Journal: BMJ Open Date: 2019-02-05 Impact factor: 2.692
Authors: Jayden Blackwood; Frances C Wright; Nicole J Look Hong; Anna R Gagliardi Journal: Breast Cancer Res Treat Date: 2019-06-18 Impact factor: 4.872
Authors: Bryanna B Nyhof; Frances C Wright; Nicole J Look Hong; Gary Groot; Lucy Helyer; Pamela Meiers; May Lynn Quan; Nancy N Baxter; Robin Urquhart; Rebecca Warburton; Anna R Gagliardi Journal: Health Expect Date: 2019-09-18 Impact factor: 3.377