Size and influence of the decision support networks of women newly diagnosed with breast cancer.

Abstract

e18012 Background: Little is known about the size and characteristics of informal decision support networks of women diagnosed with breast cancer and whether involvement of informal decision supporters (DSP) influences breast cancer treatment decisions. Methods: A population-based sample of newly diagnosed breast cancer patients reported to the Georgia and Los Angeles SEER registries in 2014-15 were surveyed approximately 6 months after diagnosis (N = 2,502, 68% response rate). Network size was estimated by asking women to list up to 3 of the most important DSPs who helped them with locoregional therapy decisions. For each individual DSP listed, respondents reported how important each DSP’s opinion was in treatment decision making, and how satisfied they were with their involvement (5 pt. scales, “not at all” to “very”). Decision deliberation was measured using 5-items assessing degree patients thought through the decision, with higher scores reflecting more deliberative treatment decisions. We compared network size (0-3 or more) across patient-level characteristics and estimated the association between network size and deliberation using multivariable linear regression. Results: Of the 2,502 women in this analysis, 51% reported having 3 or more DSPs, 20% reported 2, 18% reported 1, and 11% reported not having any DSPs. Married/partnered women, those younger than 45 years old, and black women were all more likely to report larger networks (all p < 0.001). Partnered women most often reported their partner as their main DSP (37.9%), whereas not partnered/unmarried women most often reported children (38.4%). The majority of women were highly satisfied with their DSP being involved in their decisions (76.5%) and 68.6% felt their DSP was very important in their decision making. Larger support networks were associated with more deliberative surgical treatment decision-making (p < 0.001). Conclusions: Most women engaged multiple DSPs in their treatment decision making, including spouses, children, and friends. Involving more DSPs was associated with more deliberative treatment decisions. Future initiatives to improve breast cancer treatment decision making should acknowledge and engage informal DSPs.