A total of 6,918 MCBDR participants (6,877 female) were sent surveys, and 2,450 responses (response rate= 35.4%) were received. Thirteen males were excluded, resulting in a final study size of 2,437. Overall, the mean age of participants was 64 (SD 11.8), and 202 (8.3%) were aged ≥ 80 years. The mean time from BC diagnosis at the time of the survey was 93.3 months (SD 70.2). Comparisons of demographic and clinical characteristics of BC P80+ vs. P80- across survey response status are provided in Table 1.
3.1. Advocate-BREAST80+ Substudy Results
Compared with responding P80-, responding P80+ were more likely to be white (p=0.0136), widowed (<.0001), living in a rural location (0.0136), and initially diagnosed with BC ≥ 24 months prior to completing the survey (<.0001). For P80+, the mean time from BC diagnosis at the time of survey completion was 128.5 months (SD 74.4), compared to 90.1 months (SD 68.9) for P80- (p= <0.001). The BC stage distribution for patients (Stage 0-4) was similar in P80+ compared with P80- (p=0.2571). Based on these results, the following variables were used to calculate propensity scores for subsequent weighted analyses: race, marital status, religion, time since BC diagnosis, primary BC treatment location, and recommendation status for surgery, chemotherapy, radiotherapy, endocrine therapy, biologic therapy, and immunotherapy.
Overall, P80+ were less likely to report that they had been advised to undergo local regional and systemic therapies than P80-. Specifically, surgery was recommended less frequently for P80+ compared with P80- (p=0.0062, Table 1). However, when surgery was recommended, P80+ were as likely to proceed with the same compared with P80- (p=0.5643). Adjuvant radiation therapy was also less likely to be recommended for P80+ compared with P80- (p= 0.0037); however, there was no difference between the groups regarding the likelihood of proceeding with radiation therapy if advised (p=0.6635).
Regarding systemic therapies, P80+ were less likely to be advised to pursue chemotherapy, immunotherapy, targeted biologic therapy or endocrine therapy compared with P80- (p= <.0001 for each of these treatments). Further, although P80+ were less likely to proceed with recommended endocrine therapy (p=0.0011), targeted biologic therapy (p= 0.0940), and immunotherapy (p=0.0015), they were as likely as P80- to proceed with chemotherapy if recommended (p= 0.1641).
Overall, the most severe symptom experienced by patients in their first year following BC diagnosis was hair loss/thinning, followed by hot flashes, eyebrow/eyelash thinning, sexual dysfunction, cognitive/memory issues, neuropathy and lymphedema. Compared to P80-, P80+ were significantly less impacted by hot flashes, eyebrow/eyelash thinning, sexual dysfunction, cognitive/memory issues and lymphedema than P80- (p <0.0001 each).
The main concerns patients of all ages recalled in the first year following their BC diagnosis were i) fear of BC recurrence/spread; ii) concerns about loved ones coping; iii) diagnosis and prognosis; iv) fear of dying of BC; v) weight/physical fitness; and vi) their emotional health. P80+ were significantly less impacted than P80- regarding these issues (p <.0001 for each item), although they were still identified as top concerns overall.
Patients reported a high level of overall satisfaction with BC care received (>90%). Specifically, P80+ reported higher overall satisfaction with BC care than P80- (p=0.0015). P80+ reported similar satisfaction overall with the information and support received from their cancer care teams compared with P80- (0.9826).
In the first year after BC diagnosis, patients of all ages were least satisfied with the information provided regarding i) the side effects of immunotherapy, ii) the side-effects of targeted biologic therapies, iii) sexual dysfunction, iv) the long-term side-effects of chemotherapy, and v) eyebrow/eyelash thinning.
When compared with P80-, P80+ were significantly less satisfied with information they received regarding i) the potential side effects of immunotherapy (p= 0.0320), targeted biologic therapies (p=0.008), sexual dysfunction (p <.0001), peripheral neuropathy (p<0.0001), hair loss/thinning (p= 0.0030), lymphedema (p < 0.0001), hot flashes (p < 0.0001), the short and long-term side effects of radiotherapy (p < 0.0001 and 0.0277, respectively) and the short term side-effects of chemotherapy (p<0.001).
In the first year after BC diagnosis, patients of all ages reported high satisfaction overall with support provided (~90%). Specifically, there were no significant differences between P80+ and P80- regarding satisfaction with the availability of information pertaining to their BC diagnosis, access to their care team, and the amount of information available regarding their treatment plan. However, P80+ reported lower satisfaction with information provided regarding genetic testing (self) (p=0.0239).
Compared to P80-, P80+ similarly prioritized proposed QI interventions focusing on i) provision of lifetime access to online educational resources (p=0.2588). QI interventions focused on i) wellness for early breast cancer (EBC) and metastatic breast cancer (MBC) patients and ii) educational, practical, emotional and holistic support for patients with MBC were also considered high priority, but did not differ across age.
P80+ were less likely to have visited an integrative medicine provider for BC treatment than P80- (p=0.0003). P80+ who met with integrative medicine were as likely to have taken supplements or vitamins recommended as P80- (p= 0.0056). Despite lower care satisfaction reported overall compared with P80- (p= 0.0002), 80% of P80+ were satisfied/very satisfied with care received from integrative medicine. However, data from this section should be interpreted cautiously given the small number of P80+ who responded to these questions.
P80+ were less likely to have received a second opinion (p <0.0001). P80+ were also more likely to have received assistance from a patient advocate regarding BC-related logistics and treatment decisions (p=0.0029).
Regarding clinical trials, 40.5% of P80+ reported prior study participation vs. 47.2% of P80- (p <0.001), and P80+ were less open to participating in a trial in the future (p=0.0001) compared with P80- (18.6% responded “No” and 40.7% unsure).
Seventy-seven of 202 P80+ answered open-ended survey questions (Table 3).
Major themes identified were: (1) BC Education, (2) Side-Effects of BC Treatment, and (3) Emotional Support During and After BC Diagnosis. Regarding BC education, suggestions included avoiding multiple printed resources unrelated to the patient’s diagnosis and treatment plan, instead providing tailored information based on patient preferences (more vs. less information). Patients also advised that clinicians use less medical terminology and provide thorough information regarding all treatment options. Regarding managing side-effects of BC treatment, suggestions included more detailed information regarding short and long term sequelae of local and systemic therapy. Regarding emotional supports, patients noted the importance of ongoing access to BC and community support groups. The need for provider education and ongoing efforts to optimize emotional support for BC patients was also highlighted. Other themes included (4) Care Concerns/Provider Sensitivity (need to consider patient frailty, vulnerability and increased susceptibility to discomfort during medical procedures), (5) Survivorship/Long Term Sequelae of BC treatment (advice about surveillance, prosthesis selection etc.), (6) Diversity, Ethnicity and Inclusion (questions regarding applicability of BC data for ethnic minorities), (7) BC Care Access (faster surgery and test results), (8) Dense Breast Tissue Screening (insurance coverage), (9) Diet and Exercise (nutrition consultations) and (10) Sexual Dysfunction. Regarding thoughts on what areas of research should be championed, respondents prioritized focusing on efforts to determine the causes of BC, as well as to prevent and cure the same.