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Informal decision support networks and treatment decisions for breast cancer.

24 Background: Although nearly 80% of breast cancer patients have someone with them during surgical consultations, there is little research that examines the extent, nature, or impact of informal decision support persons (DSPs) such as partner/spouse, other family members, or friends on breast cancer treatment decision making.


METHODS
Two data sources were used: 1) A population based sample of patients recently diagnosed in 2006/7 in the Detroit and Los Angeles SEER catchment areas completed a survey 9 months (N=1837, 72% response rate); and 2) A pilot survey study of a convenience sample of 150 breast cancer patients at three clinical sites surveyed within 18 months that examined more details on the extent and nature of informal decision support networks, including: a) quantity and type of DSPs involved in their treatments, b) number of appointments attended by DSPs, and c) patient-reported satisfaction with DSP's involvement in treatment decision making.


RESULTS
Both a spouse/partner and another family member were very important in treatment decision-making for 33% of patients; a spouse/partner alone was very important for 19%; a family member alone was very important for 13%. A spouse/partner or friends were not important in treatment decision making for 24% of patients. Only 19% of patients reported that a friend was very important in treatment decision making. Friends were much more frequently endorsed among patients with family involvement (45%) vs those without family involvement (5%). Latina patients significantly more often reported that the opinion of a family member was very important vs. other race/ethnic groups (71% vs. 39%, p<0.001). Patients in the pilot study reported an average of 2.67 DSPs were involved in locoregional decision making (SD = 2.57 ) vs. an average of 0.8 (SD=1.03) for involvement in systemic treatment decision making.


CONCLUSIONS
Many breast cancer patients rely on some informal decision support, but there is a very wide variation in the extent and nature of this support. Further work is needed to understand how to best incorporate DSPs into the treatment decision process. Additional findings will be presented to further describe the impact of informal treatment decision support for women with breast cancer.