Patient-reported outcomes, and perceptions and knowledge about recurrence in women with hormone receptor-positive breast cancer.

Purpose: Over half of hormone receptor-positive (HR+) breast cancer recurrences occur >5 years from diagnosis, however, little is known about well-being or breast cancer risk perceptions and knowledge in long-term HR+ breast cancer survivors.

Methods: From 1/2021 to 1/2022, we surveyed patients with a history of stage II/III, HR+ breast cancer, ≥5 years from diagnosis, without recurrence about concerns and perceptions related to their diagnosis and recurrence risk, physical and emotional health, knowledge, and risk reduction. Logistic regression identified factors associated with overestimation of 5-10 year distant recurrence risk.

Results: Among 166 women, median age at diagnosis was 51, 2.4% were Black and 1.2% Hispanic; 19.3% did not have a college degree. Median time from diagnosis was 10 years (range: 5-23). Median PROMIS anxiety (53; range: 37-73), physical (51, range: 32-68), and mental (51, range: 25-68) scores were similar to population norms (score of 50). 40% of women estimated metastatic recurrence risk to be ≥20% 5-10 years post-treatment; patients without a college degree were more likely to overestimate this risk (multivariable prevalence odds ratio: 3.69, 95% confidence interval: 1.49, 9.18). Only 17% correctly indicated HR+ breast cancer as having a higher risk of recurrence after 5 years; over one-third inaccurately responded that alcohol in moderation decreases recurrence risk.

Conclusion: While physical and emotional health were comparable to the general population, many survivors harbored inaccurate risk perceptions and knowledge. The association between lower educational attainment and risk overestimation underscores the importance of attention to literacy and numeracy when developing interventions to improve risk communication.