Purpose: To describe involvement in treatment decision-making and unmet information needs of racially/ethnically diverse partners of breast cancer patients.
Methods: We surveyed 503 partners of breast cancer survivors who had responded to a population based survey being conducted in two metropolitan SEER registry sites. Partners were sent invitations and surveys via the patient, with a separate return envelope and a $10incentive. To date, 370 have returned surveys (RR=74%). Primary outcomes include partner reports of participation in treatment discussions (yes vs. no), perspectives regarding their involvement in treatment decisions (low vs. high), desire for more involvement (yes vs. no), decision regret (5 items), and their own information needs. Independent variables included race/ethnicity and age.
Results: 55% of partners were white, 30% Hispanic, 11% African American (AA) and 3% other. Most partners reported participating in treatment discussions (67% white, 56% Hispanic, 58% AA, P=.389), and most (60%) wanted their wife/partner to have lumpectomy. Hispanic partners more often reported low involvement in treatment decisions (32% vs. 56% for white and AA, P=0.02), and desire for more involvement (50% vs. 18% for white and 42% for AA, P<0.001). Hispanic partners were 4 times as likely as whites to report high levels of decision regret (OR 4.3, 95% CI 2.2-8.7). Many reported not getting enough information about the long term effects of breast cancer on their partner (56%), the risk of breast cancer recurrence in their partner (60%), how to cope with their partners’ cancer (57%) or managing their own fears about cancer returning (38%). Hispanic partners more frequently reported wanting these and other concerns addressed by doctors (60% vs. 31% for white, and 19% for AA, P<0.001).
Conclusions: Partners of patients with breast cancer are frequently involved in treatment decision-making and have treatment preferences. However, decision quality appears low and many partners desire more information and decision support, particularly among Hispanics. These results motivate interventions that incorporate partners more fully in treatment decision-making.
See more of: The 33rd Annual Meeting of the Society for Medical Decision Making