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A Patient-centered Approach to Evaluate the Information Needs of Women With Ductal Carcinoma In Situ

Lo, Andrea C. MD*,†; Olson, Robert MD, FRCPC†,‡; Feldman-Stewart, Deb PhD§; Truong, Pauline T. MD, CM, FRCPC†,∥; Aquino-Parsons, Christina MD, FRCPC*,†; Bottorff, Joan L. PhD, RN; Carolan, Hannah MD, FRCPC*,†

American Journal of Clinical Oncology: December 2017 - Volume 40 - Issue 6 - p 574–581
doi: 10.1097/COC.0000000000000184
Original Articles: Breast

Objective: To evaluate the information needs of ductal carcinoma in situ (DCIS) patients.

Methods: Four focus groups involving 24 previously treated DCIS patients were conducted to develop a comprehensive list of questions they felt were important to have answered at the time of diagnosis. Using a survey, a separate group of patients treated for DCIS then rated the importance of having each of these questions addressed before treatment decision making. Response options were “essential,” “desired,” “not important,” “no opinion,” and “avoid.” For each essential/desired question, respondents specified how addressing it would help them: “understand,” “decide,” “plan,” “not sure,” or “other.”

Results: Focus group participants generated 117 questions used in the survey. Fifty-seven patients completed the survey (55% response rate). Respondents rated a median of 66 questions as essential. The most commonly cited reason for rating a question essential was to “understand,” followed by to “decide.” The top questions women deemed essential to help them understand were disease specific, whereas the top questions deemed essential to help women decide were predominantly treatment specific, pertaining to available options, recurrence and survival outcomes, and timelines to decide and start treatment.

Conclusions: DCIS patients want a large number of questions answered, mostly for understanding, and also for deciding and planning. A core set of questions that most patients consider essential for decision making has been formulated and may be used in the clinical setting and in research to develop educational resources and decision-making tools specific to DCIS.

*Department of Radiation Oncology, British Columbia Cancer Agency (BCCA)

Faculty of Medicine, University of BC, Vancouver

Department of Radiation Oncology, British Columbia Cancer Agency (BCCA), Prince George

Department of Radiation Oncology, British Columbia Cancer Agency (BCCA), Victoria

School of Nursing, University of British Columbia’s Okanagan Campus, Kelowna, BC

§Department of Oncology and Cancer Research Institute, Queen’s University, Kingston, ON, Canada

Supported by a Canadian Breast Cancer Foundation BC/Yukon Chapter Research Grant.

The authors declare no conflict of interest.

Reprints: Andrea C. Lo, MD, BC Cancer Agency Vancouver Centre, 600 West 10th Avenue, Vancouver, BC, Canada V5Z 4E6. E-mail: andrealo@gmail.com.

Copyright © 2017 Wolters Kluwer Health, Inc. All rights reserved.