Decision‐support networks of women newly diagnosed with breast cancer

Abstract

Background Little is known about the size and characteristics of the decision support networks of women newly diagnosed with breast cancer and whether their involvement improves breast cancer treatment decisions. Methods A population-based sample of patients newly diagnosed with breast cancer in 2014–15 as reported to the Georgia and Los Angeles SEER registries were surveyed approximately 7 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 decision support people (DSP) who helped them with locoregional therapy decisions. Decision deliberation was measured using 4-items assessing degree to which patients thought through the decision, with higher scores reflecting more deliberative breast cancer treatment decisions. We compared the size of the network (0–3 or more) across patient-level characteristics and estimated the adjusted mean deliberation scores across levels of network size using multivariable linear regression. Results Of the 2,502 women included 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 network sizes (all p<0.001). Larger support networks were associated with more deliberative surgical treatment decisions (p <0.001). Conclusions Most women engaged multiple DSPs in their treatment decision making, and involving more DSPs was associated with more deliberative treatment decisions. Future initiatives to improve treatment decision making among breast cancer patients should acknowledge and engage informal DSPs.

Understanding the engagement of key decision support persons in patient decision making around breast cancer treatment

“…As described previously, 6 the Individualized Cancer Care (iCanCare) study is a large, population-based survey study of women with breast cancer. We accrued 3930 women, aged 20 to 79 years, with newly diagnosed stage 0 to II breast cancer as reported to the Surveillance, Epidemiology, and End Results (SEER) registries of Georgia and Los Angeles County in 2014-2015.…”

“…Patients were asked to complete a table describing individuals who played a key role in decisions about locoregional and systemic treatment. 6 They were then instructed to think about the person who was "most helpful" in these decisions (the key DSP) and asked to either 1) provide the name and mailing address of this individual directly to our research team or 2) receive a survey packet to deliver to this individual (including mailing if needed; postage was included). Eligible DSPs were 21 years old or older, were able to read English or Spanish, and resided in the United States.…”

“…We assessed 2 related but distinct domains of patients' appraisal of their own decision making: 1) subjective decision quality (SDQ) and 2) deliberation (or the extent of "thinking through" the treatment options). As previously 6 assessing the degree to which patients thought through their treatment-related decisions. In agreement with prior studies, both measures were dichotomized with high and low cut points; an overall SDQ score higher than 4 indicated greater SDQ, 7,22 and an overall deliberation score higher than 4 indicated a more deliberative decision.…”

“…Further details regarding variations in DSP types and characteristics by patient characteristics have been reported previously. 6…”

“…5 We further found that although 90% reported that at least 1 key DSP was involved in their treatment decisions, there was wide variation in the size and influence of this network. 6 This raises the possibility that some DSPs are less engaged in decision making than others. However, little research has been done on DSP engagement in the medical decision-making process, and even less is known about how such engagement influences the quality of patient decision making and patient outcomes.…”