Purpose: To identify the questions that post-menopausal women want answered as they consider adjuvant endocrine therapy for early-stage breast cancer, to help them decide among 6 distinct treatment options.
Methods: We surveyed women with early-stage breast cancer whose adjuvant endocrine-therapy decisions were made 3-18 months earlier. Respondents rated the importance of getting each of 95 questions answered before this decision is made (options: essential/desired/not important/avoid). For questions rated essential or desired, respondents identified their purpose(s) for the answer, to help them: understand, make the decision, plan, or other. Respondents indicated the role they played in their actual decision (options: I made decision alone/with doctor/with family/with family and doctor/family and doctor made decision alone/family made decision alone/doctor made decision alone) and the role they would prefer if the decision was made today. They also indicated whether they felt they had had a choice.
Results: Questionnaires were sent to 343 patients from 3 centres; 287 were returned (response rate 55%). Mean age was 67 yr old (range 38-88 yr); 76% were married, and 39% had secondary school education or less. No outcome related to the questions differed across centres. On average, respondents rated 58 questions (range:1-95) “essential”, of which 18 (range:0-94) were for decision making. Each question was rated essential for decision making by ≥7% of respondents but only 1 question by >50%. Regarding roles, 89% of respondents reported participating in making their actual decision and would want to again today; an additional 9% did not participate in their actual decision but would want to if it was made today. Some respondents reported that they had not had a choice of treatments, varying significantly across centres: 24% vs 41% and 49%.
Conclusions: Most patients report that they want to participate in this decision but there are wide differences within the group regarding the number and which specific questions they want addressed to help them make the decision. Implication: The substantial subgroup that felt they had not had a choice raises concern about the balance of information provided to them. There is need for decision support for these patients but, given the variation in questions considered important, the support needs to be tailored to the needs of the individual patient.
See more of: The 34th Annual Meeting of the Society for Medical Decision Making