A Patient-centered Approach to Evaluate the Information Needs of Women With Ductal Carcinoma In Situ.
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.
Andrea C
AC
Lo
Faculty of Medicine, University of BC, Vancouver.|Department of Radiation Oncology, British Columbia Cancer Agency (BCCA), Prince George.
Robert
R
Olson
Department of Oncology and Cancer Research Institute, Queen's University, Kingston, ON, Canada.
Deb
D
Feldman-Stewart
Faculty of Medicine, University of BC, Vancouver.|Department of Radiation Oncology, British Columbia Cancer Agency (BCCA), Victoria.
Pauline T
PT
Truong
Department of Radiation Oncology, British Columbia Cancer Agency (BCCA).|Faculty of Medicine, University of BC, Vancouver.
Christina
C
Aquino-Parsons
School of Nursing, University of British Columbia's Okanagan Campus, Kelowna, BC.
Joan L
JL
Bottorff
Department of Radiation Oncology, British Columbia Cancer Agency (BCCA).|Faculty of Medicine, University of BC, Vancouver.
Hannah
H
Carolan
D018931:Antineoplastic Agents, Hormonal / Q000627:therapeutic use; D001294:Attitude to Health; D001943:Breast Neoplasms / Q000523:psychology* / Q000628:therapy; D002285:Carcinoma, Intraductal, Noninfiltrating / Q000523:psychology* / Q000628:therapy; D017024:Chemotherapy, Adjuvant; D032882:Comprehension; D003657:Decision Making; D005260:Female; D017144:Focus Groups; D006801:Humans; D008408:Mastectomy; D015412:Mastectomy, Segmental; D008875:Middle Aged; D010353:Patient Education as Topic; D010358:Patient Participation; D018802:Patient-Centered Care; D036301:Qualitative Research; D018714:Radiotherapy, Adjuvant; D013629:Tamoxifen / Q000627:therapeutic use
D018931:Antineoplastic Agents, Hormonal; D013629:Tamoxifen