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Research Letter |

Impact of Ductal Carcinoma In Situ Terminology on Patient Treatment Preferences FREE

Zehra B. Omer, BA1; E. Shelley Hwang, MD, MPH2; Laura J. Esserman, MD, MBA3; Rebecca Howe, BA3; Elissa M. Ozanne, PhD3
[+] Author Affiliations
1Massachusetts General Hospital–Institute for Technology Assessment, Boston
2Department of Surgery, Duke University Medical Center, Durham, North Carolina
3Department of Surgery, University of California, San Francisco
JAMA Intern Med. 2013;173(19):1830-1831. doi:10.1001/jamainternmed.2013.8405.
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Published online

Ductal carcinoma in situ (DCIS) is a preinvasive malignancy of the breast and is diagnosed in more than 50 000 women a year in the United States. It is treated with either mastectomy or lumpectomy, often combined with radiation therapy.1 In cases of low-grade DCIS, studies suggest that if progression occurs, it does so within a time frame of 5 to 40 years2 and possibly in only 20% of DCIS cases.3 This raises the possibility that some cases of DCIS will follow an indolent course that will not attain clinical significance during the patient’s lifetime. Accordingly, watchful waiting has been proposed as a reasonable option for DCIS,4 akin to what is currently offered for patients with early stage prostate cancer; however, how to implement such a strategy is unclear.

Many women are unable to distinguish between preinvasive and invasive cancer and often overestimate the implications of a DCIS diagnosis.5 These misperceptions may drive patients’ willingness for invasive treatments. Health care providers’ communication with their patients about DCIS plays an important role in patients understanding the risks of their diagnosis. Terms such as carcinoma, stage-0 cancer, and noninvasive cancer are commonly used to describe DCIS and may further contribute to the confusion engendered in many patients.6 Given the inconsistent terminology used for DCIS, we hypothesized that when DCIS is described without the term cancer, women would be more likely to opt for noninvasive approaches such as medication or watchful waiting in place of surgery.

To explore this hypothesis, we surveyed 394 healthy women without a history of breast cancer. The women were presented with 3 scenarios that described a diagnosis of DCIS as noninvasive breast cancer, breast lesion, or abnormal cells. Each scenario and the accompanying table of treatment options and outcomes of treatment (chance of developing invasive breast cancer or death) were identical, with the only difference being the term used for DCIS. After each scenario, participants chose among 3 treatment options (surgery, medication, or active surveillance). The order of scenarios was varied randomly across participants, with an equal distribution of each sequence. Each participant viewed the 3 scenarios, made 3 separate choices, and provided reasons for each choice. In the Supplement, eFigure 1 shows an example scenario of a DCIS diagnosis and the table of treatment options that participants viewed. Data were collected on demographics as well as covariates that may affect treatment decisions (eTable 1 in the Supplement).79

There were significant differences in the distribution of treatment choices among the 3 scenarios (P < .001; Table). Overall, nonsurgical options (medication and active surveillance) were more frequently selected over surgery. When DCIS was described using the term noninvasive cancer, 53% (208 of 394) of participants preferred nonsurgical options, whereas 66% (258 of 394) chose nonsurgical options when the term was breast lesion and 69% (270 of 394) chose nonsurgical options when the term was abnormal cells. Significantly more women changed their preference from a surgical to a nonsurgical option than from a nonsurgical to a surgical option depending on terminology used (P < .001; eTable 2 in the Supplement). Women with a history of (nonbreast) cancer and women with high socioeconomic status more frequently chose surgery in univariate analysis but not in a multivariate model (eTable 3 in the Supplement). High numeracy was the single independent predictor of surgical treatment choice for all 3 terms in the multivariate logistic regression model: cancer (odds ratio [OR], 2.11; 95% CI, 1.34-3.34 [P = .001]), lesion (OR, 1.96; 95% CI, 1.20-3.19 [P = .007]), abnormal cells (OR, 1.63; 95% CI, 1.01-2.67 [P = .048]) (eFigure 2 in the Supplement).

Table Graphic Jump LocationTable.  Distribution of Treatment Preferences Across the 3 Different Terms

We found that when DCIS is framed as a high-risk condition rather than as cancer, more than 65% of women opt for nonsurgical treatments. These results suggest that many women may prefer nonsurgical options if allowed to weigh each choice and its attendant risks. Our survey specifically reminded the participants that risks and benefits were the same among all 3 scenarios; however, excluding the word cancer in the diagnosis shifted many participants to choose a less-invasive option.

There were several limitations of the present study. First, the study cohort was highly educated, numerate, and well insured, with a higher than average income level, thus differing from a population-based cohort of patients with DCIS. Second, we administered hypothetical scenarios to individuals personally not diagnosed as having DCIS. While it is possible that patients with DCIS may react differently to the survey, the use of hypothetical scenarios allowed us to explore women’s preferences toward systemic therapy and active surveillance, unbiased by previous knowledge regarding DCIS and standard modes of treatment options. Finally, the projected outcomes in the scenarios were generalized and static, whereas true outcomes vary depending on patient age, tumor grade, and other case-specific factors.

We conclude that the terminology used to describe DCIS has a significant and important impact on patients’ perceptions of treatment alternatives. Health care providers who use “cancer” to describe DCIS must be particularly assiduous in ensuring that patients understand the important distinctions between DCIS and invasive cancer.

Corresponding Author: Elissa M. Ozanne, PhD, University of California, San Francisco, 3333 California St, Ste 265, San Francisco, CA 94118 (Elissa.ozanne@ucsfmedctr.org).

Published Online: August 26, 2013. doi:10.1001/jamainternmed.2013.8405.

Author Contributions: Study concept and design: Omer, Hwang, Esserman, Ozanne.

Acquisition of data: Omer, Esserman, Ozanne.

Analysis and interpretation of data: Omer, Hwang, Esserman, Howe, Ozanne.

Drafting of the manuscript: Omer, Hwang, Esserman, Ozanne.

Critical revision of the manuscript for important intellectual content: Omer, Hwang, Esserman, Howe, Ozanne.

Statistical analysis: Omer, Hwang, Esserman, Howe.

Obtained funding: Ozanne.

Administrative, technical, or material support: Omer, Esserman, Howe.

Study supervision: Hwang, Ozanne.

Conflict of Interest Disclosures: None reported.

Funding/Support: This study was supported by the American Cancer Society (MRSG112037) (Dr Ozanne).

Previous Presentation: This study was presented as a poster at the San Antonio Breast Cancer Symposium; December 9, 2011; San Antonio, Texas.

Virnig  BA, Tuttle  TM, Shamliyan  T, Kane  RL.  Ductal carcinoma in situ of the breast: a systematic review of incidence, treatment, and outcomes. J Natl Cancer Inst. 2010;102(3):170-178.
PubMed   |  Link to Article
Sanders  ME, Schuyler  PA, Dupont  WD, Page  DL.  The natural history of low-grade ductal carcinoma in situ of the breast in women treated by biopsy only revealed over 30 years of long-term follow-up. Cancer. 2005;103(12):2481-2484.
PubMed   |  Link to Article
Ozanne  EM, Shieh  Y, Barnes  J, Bouzan  C, Hwang  ES, Esserman  LJ.  Characterizing the impact of 25 years of DCIS treatment. Breast Cancer Res Treat. 2011;129(1):165-173.
PubMed   |  Link to Article
Esserman  L, Shieh  Y, Thompson  I.  Rethinking screening for breast cancer and prostate cancer. JAMA. 2009;302(15):1685-1692.
PubMed   |  Link to Article
Partridge  A, Adloff  K, Blood  E,  et al.  Risk perceptions and psychosocial outcomes of women with ductal carcinoma in situ: longitudinal results from a cohort study. J Natl Cancer Inst. 2008;100(4):243-251.
PubMed   |  Link to Article
Partridge  A, Winer  JP, Golshan  M,  et al.  Perceptions and management approaches of physicians who care for women with ductal carcinoma in situ. Clin Breast Cancer. 2008;8(3):275-280.
PubMed   |  Link to Article
Fagerlin  A, Zikmund-Fisher  BJ, Ubel  PA, Jankovic  A, Derry  HA, Smith  DM.  Measuring numeracy without a math test: development of the Subjective Numeracy Scale. Med Decis Making. 2007;27(5):672-680.
PubMed   |  Link to Article
Gramling  R, Anthony  D, Frierson  G, Bowen  D.  The cancer worry chart: a single-item screening measure of worry about developing breast cancer. Psychooncology. 2007;16(6):593-597.
PubMed   |  Link to Article
Spitzer  RL, Kroenke  K, Williams  JB, Löwe  B.  A brief measure for assessing generalized anxiety disorder: the GAD-7. Arch Intern Med. 2006;166(10):1092-1097.
PubMed   |  Link to Article

Figures

Tables

Table Graphic Jump LocationTable.  Distribution of Treatment Preferences Across the 3 Different Terms

References

Virnig  BA, Tuttle  TM, Shamliyan  T, Kane  RL.  Ductal carcinoma in situ of the breast: a systematic review of incidence, treatment, and outcomes. J Natl Cancer Inst. 2010;102(3):170-178.
PubMed   |  Link to Article
Sanders  ME, Schuyler  PA, Dupont  WD, Page  DL.  The natural history of low-grade ductal carcinoma in situ of the breast in women treated by biopsy only revealed over 30 years of long-term follow-up. Cancer. 2005;103(12):2481-2484.
PubMed   |  Link to Article
Ozanne  EM, Shieh  Y, Barnes  J, Bouzan  C, Hwang  ES, Esserman  LJ.  Characterizing the impact of 25 years of DCIS treatment. Breast Cancer Res Treat. 2011;129(1):165-173.
PubMed   |  Link to Article
Esserman  L, Shieh  Y, Thompson  I.  Rethinking screening for breast cancer and prostate cancer. JAMA. 2009;302(15):1685-1692.
PubMed   |  Link to Article
Partridge  A, Adloff  K, Blood  E,  et al.  Risk perceptions and psychosocial outcomes of women with ductal carcinoma in situ: longitudinal results from a cohort study. J Natl Cancer Inst. 2008;100(4):243-251.
PubMed   |  Link to Article
Partridge  A, Winer  JP, Golshan  M,  et al.  Perceptions and management approaches of physicians who care for women with ductal carcinoma in situ. Clin Breast Cancer. 2008;8(3):275-280.
PubMed   |  Link to Article
Fagerlin  A, Zikmund-Fisher  BJ, Ubel  PA, Jankovic  A, Derry  HA, Smith  DM.  Measuring numeracy without a math test: development of the Subjective Numeracy Scale. Med Decis Making. 2007;27(5):672-680.
PubMed   |  Link to Article
Gramling  R, Anthony  D, Frierson  G, Bowen  D.  The cancer worry chart: a single-item screening measure of worry about developing breast cancer. Psychooncology. 2007;16(6):593-597.
PubMed   |  Link to Article
Spitzer  RL, Kroenke  K, Williams  JB, Löwe  B.  A brief measure for assessing generalized anxiety disorder: the GAD-7. Arch Intern Med. 2006;166(10):1092-1097.
PubMed   |  Link to Article

Correspondence

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Submit a Comment
Doctor's treatment recommendation more powerful than names
Posted on August 27, 2013
Candace Andrews
Breast Cancer Club
Conflict of Interest: None Declared
I believe the results of this study validate the impression that presented with an incidence of abnormality using language that match the likelihood of progression and the urgency/non-urgency of invasive treatment, patients will more likely opt for the treatment deemed appropriate by the physician. However, on what basis will the physician recommend a non-surgical option for ductal in situ abnormalities? What research has been done involving active surveillance of DCIS? Is not the standard of care at this time surgery, generally followed by radiation and Tamoxifen? Before we worry about the language used to describe the abnormalities, there needs to be broad consensus among doctors as to the circumstances that would encourage a non-surgical or non-invasive treatment recommendation. Plainly put, I have never heard of a doctor recommending anything but biopsy when suspicious (clustered) calcifications are detected on imaging and surgery at minimum when DCIS is confirmed.
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Multimedia

Supplement.

eTable 1. Tools Used to Assess Covariates

eTable 2. Treatment Preferences for Surgical/Nonsurgical Options by Terminology Used in Scenario

eTable 3. Univariate Analysis of Factors Associated with Surgical Treatment Choice

eFigure 1. Example Scenario of a Ductal Carcinoma In-Situ Diagnosis and the Table of Treatment Options That Subjects Viewed

eFigure 2. Predictors of Surgical Treatment Choice for all 3 Terms in the Multivariate Logistic Regression Model

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