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

Abstract

Objective: To identify questions that post-menopausal women with receptor-positive early-stage breast cancer want answered before their adjuvant-endocrine-therapy decision is made.

Methods: We 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).

Results: The 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).

Conclusion: Many 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 implications: Patient education in this setting needs to be tailored to the needs of the individual patient.

Keywords: Adjuvant endocrine therapy decision; Breast cancer; Patient education; Patient information needs.