Information needs of post-menopausal women with hormone receptor positive early-stage breast cancer considering adjuvant endocrine therapy

ObjectiveTo identify questions that post-menopausal women with receptor-positive early-stage breast cancer want answered before their adjuvant-endocrine-therapy decision is made.MethodsWe surveyed patients eligible for adjuvant-endocrine therapy in the previous 3-18 months. Participants rated the importance of getting each of 95 questions answered before the decision is made (options: essential/desired/not important or no opinion/avoid). For each question rated “essential”/“desired”, the participant also identified the purpose(s) for the answer: to help her understand, decide, plan, or other reason(s).ResultsThe response rate was 55% (188/343). Participants rated a mean of 57 (range: 1-95) questions “essential”, 80 (range: 1-95) “essential” or “desired”, and 2 (range: 0-27) “avoid”. Every question was “essential” to ≥31% of participants, and “essential”/“desired” to ≥63%. All but eleven questions were rated as “avoid” by ≥1 participant. The most frequent purposes for “essential” questions were to: understand their situations (mean 45, range: 0-95), decide (mean 18, range: 0-94), and plan (mean 13, range: 0-95).ConclusionMany patients want a lot of information before this decision is made but there is wide variation within the group in both the number and in which questions they want answered.Practice implicationsPatient education in this setting needs to be tailored to the needs of the individual patient.