Background: Retrospective studies have reported that breast cancer patients who perceived more personal responsibility for the surgery decision were more likely to undergo aggressive surgery. We examined this in a prospective study.
Methods: 100 newly diagnosed breast cancer patients identified their decision- making role using the Patient Preference Scale. Chart review captured the initial surgery received. Patient decision role preference, role perception, role concordance, and provider role perception were compared with type of surgery to assess differences between mastectomy and lumpectomy groups and unilateral versus bilateral mastectomy. We compared type of surgery and patient role concordance. Satisfaction with Decision immediately after the visit, Decision Regret and FACT-B quality of life at 2 weeks and 6 months were assessed and compared with type of surgery.
Results: Patient decision role preference (p = 0.49) and perception (p = 0.16) were not associated with type of surgery. Provider perception of patient role was associated with type of surgery, with providers perceiving more passive patient roles in the mastectomy group (p = 0.026). Patient role preference varied significantly by stage of disease (= 0.024), with stage 0 (64%, N = 6) and stage III (60%, N = 6) patients preferring active roles and stage I (60%, N = 25) and stage II (52%, N = 16) patients preferring a collaborative role.
Conclusions: Patient role preference and perception were not associated with type of surgery, while provider perception of patient role was. Patient role preference varied by stage of disease. Further study is warranted to better understand how disease factors and provider interactions affect decision role preferences and perceptions and surgical choice.
Trial registration: The study was registered with clinicaltrials.gov (NCT03350854). https://clinicaltrials.gov/ct2/show/NCT03350854 .