Allison Harvey

Abstract P2-10-04: Characterizing the metastatic breast cancer patient experience around preparing for a treatment decision

Background: An estimated 155,000 people are living with metastatic breast cancer (MBC) in the US. With new developments in treatment, people are living longer with MBC and are confronted with more complex treatment decisions. Patient-provider communication is typically inadequate and patients are not fully prepared for communicating effectively with their doctor. Methods: Since March 2013, the Cancer Support Community has registered 909 people living with MBC to the Cancer Experience Registry, an online initiative designed to learn and raise awareness about the psychosocial impact of cancer. 572 registrants responded to questions about their experience with making treatment decisions. This sample was 99% female, 91% Caucasian, and 69% with a college degree and median age 56. Median time since MBC diagnosis was 3 years. Results: Before making a treatment decision, nearly all (91%) reported receiving information about their cancer type; 76% received information about their treatment choices. Only 41% indicated they received information about clinical trials prior to making a treatment decision. Just over half reported they had quite a bit of knowledge about their treatment options. However, 22% had little or no knowledge about their treatment options. Thirty-eight percent received treatment decision support prior to making a treatment decision; 45% would have liked more support. Twelve percent had little or no involvement in their treatment decision-making process. Nearly one-third (29%) did not feel they had a treatment choice and 28% reported they did not have enough time to make a treatment decision. Those who wrote down a list of questions prior to their first visit to discuss treatment options with their health care provider felt significantly more prepared to discuss their treatment options (p Conclusion: Although over two thirds of these women were satisfied with various aspects of treatment decision making including their communication and interaction with their doctor around the decision, nearly 30% of women thought that they had no choice or felt rushed in making a decision. Those women who prepared a list of questions prior to a consultation with the doctor were significantly more prepared in making an appropriate decision. While a small majority of patients report being knowledgeable about treatment options, a significant proportion report not having enough knowledge or support to fully engage in a treatment decision. Further efforts are needed to address gaps in the delivery of decision support to MBC patients. Citation Format: Joanne Buzaglo, Melissa Miller, Anne Morris, Allison Harvey, Mitch Golant. Characterizing the metastatic breast cancer patient experience around preparing for a treatment decision [abstract]. In: Proceedings of the Thirty-Seventh Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2014 Dec 9-13; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2015;75(9 Suppl):Abstract nr P2-10-04.

Patient informational needs about breast reconstruction post-mastectomy.

88 Background: For many women, receiving a breast cancer diagnosis is further complicated by decisions they will face about breast reconstruction post-mastectomy. While women are typically provided with some information about reconstruction options, little is known about the perceived value of this information and how it might ultimately affect their decision about reconstruction. The Cancer Support Community investigated these questions in a national sample of women with breast cancer to better understand their information-seeking experiences, knowledge, and decision-making about reconstruction. METHODS In 2011, 439 participants attending Frankly Speaking about Cancer: Spotlight on Breast Reconstruction, a national educational workshop, completed a post-workshop survey (56.4% response rate). 76.2% of respondents were women diagnosed with breast cancer, who reported their decisions about reconstruction as well as their experience receiving information about reconstruction. RESULTS Respondents were Caucasian (74.8%), black (11.4%), and Hispanic (10.1%), and the mean age was 48.9. Nearly half (42%) of respondents reported low levels of knowledge about breast reconstruction prior to the workshop. Of those eligible for breast reconstruction, 18.2% reported they had decided against reconstruction, 40.7% were considering their options, and 41.1% planned to undergo or had undergone reconstructive procedures. Women reported they would have liked to have had more information prior to reconstruction about a variety of topics, including more information about the procedure (43.6%), how they would look (31.1%) and feel (29.7%) after reconstruction, and information about their future breast health (31.8%). No differences were found in unmet informational needs based on their reconstruction decisional status with one exception: those who decided against reconstruction were more likely to endorse that they would have wanted more information about when to make their decision about reconstruction than the other two groups (chi square=24.6, p <.01). CONCLUSIONS Findings suggest women facing breast reconstruction often are not equipped with comprehensive information about procedures, options, outcomes, and recovery.

A 5-year review of an educational program focused on meeting the needs of patients with advanced breast cancer.

87 Background: Women living with advanced breast cancer have distinct often unmet needs, even compared to other women with breast cancer. For the past five years, the Cancer Support Community has been committed to delivering Frankly Speaking About Cancer: Advanced Breast Cancer, a comprehensive psychosocial education program created for women with metastatic breast cancer and their families. The programs clinically facilitated evidence-based education workshops have reached 2,690 attendees since its inception in 2006. The workshop provides valuable information about current treatments, clinical trials, side-effect management, and social and emotional challenges of an advanced breast cancer diagnosis. Workshop outcomes are analyzed annually, informing program content and ensuring the program is meeting the needs of those served. As the program enters its sixth year, data were consolidated across years to investigate how the program has been meeting the needs of these women and their loved ones. METHODS 1,827 workshop attendees since the programs beginning have completed evaluations (68% response rate) which included assessing levels of pre- and post-workshop knowledge about advanced breast cancer, patient-provider communication, and general workshop feedback. RESULTS 64.9% of respondents were survivors, 78.5% were Caucasian, and the average age was 56. Most workshop respondents (89.6%) reported gaining a high or very high level of knowledge about advanced breast cancer, with significant increases compared with pre-workshop levels (p <.01). Most reported intent to increase communication with their clinical team following the workshop. A majority reported feeling better equipped to ask questions to their health care team (92.1%), and discuss the possibility of clinical trials with their healthcare team (77.7%). Furthermore, 90% of attendees felt confident that after the workshop they could speak knowledgably about side effects of cancer treatment with their doctor, a key issue in regards to quality of life. CONCLUSIONS Taken together, the data indicate the continued relevance of this program for those affected by advanced breast cancer.

Abstract P6-09-09: Perceptions of marginalization in those affected by advanced breast cancer.

Those living with metastatic breast cancer have distinct and often unmet needs, even compared to others with breast cancer. To help address these needs, the Cancer Support Community has provided for the past five years, Frankly Speaking About Cancer: Advanced Breast Cancer , a comprehensive educational program developed for those with metastatic breast cancer and their loved ones. The program9s clinically facilitated evidence-based education workshops have reached 2,690 attendees since the program began in 2006. The workshop provides valuable information about current treatments, clinical trials, side-effect management, and social and emotional challenges of an advanced breast cancer diagnosis. In the present analysis, data across years were merged to investigate the psychosocial and educational needs of those affected by metastatic breast cancer and their perceptions about feeling marginalized. 1,827 workshop attendees nationwide (68% response rate) have responded to survey questions about experiences with advanced breast cancer since the program9s inception. In addition to evaluating the workshop and reporting their cancer history, attendees have provided their perceptions of the needs of those with advanced breast cancer, feelings of marginalization, and their own experiences seeking information and support. 64.9% of respondents had been diagnosed with breast cancer; the remainder (35.1%) served in a caregiving capacity. Most respondents (78.5%) were Caucasian, and the mean age was 56 years. Among those with advanced breast cancer, most (66.9%) received the diagnosis at least two years ago. In addition, 75.1% rated themselves in “very good” or “good” health, and 59.6% currently participated in support groups. There was no difference in current support group participation by time since diagnosis. Of all respondents, the majority (61.2%) endorsed that people with metastatic breast cancer have unique emotional, physical, and informational needs that are often unmet. This percentage remained unchanged across the five years of the program. Furthermore, 31.7% of all respondents endorsed that people with metastatic breast cancer are sometimes stigmatized by others with non-metastatic breast cancer. Among advanced breast cancer patients, those who believed that people with advanced breast cancer are sometimes stigmatized were significantly more likely to currently be in a support group (χ 2 = 13.2, p As the data suggest an association between feeling stigmatized and support group participation, one goal for service delivery would be to implement supportive services which address these unmet needs and perceived biases. The data also suggest that addressing concerns of those caring for advanced breast cancer patients would be beneficial. Taken together, the data strongly support the continued need for educational and support programs to address the needs of those affected by advanced breast cancer. Citation Information: Cancer Res 2012;72(24 Suppl):Abstract nr P6-09-09.

Abstract P6-09-10: Informational needs among women considering breast reconstruction post-mastectomy.

For many women, the complexity of processing and learning about their breast cancer diagnosis is further complicated by decisions to be made about breast reconstruction post-mastectomy. For women considering reconstruction post-mastectomy, obtaining information about reconstruction procedures and outcomes is a process, and multiple factors may influence the decision-making process. Little is known about the extent to which patient9s knowledge and expectations related to breast reconstruction procedures weigh on their decision-making process. To better understand and meet the needs of women facing reconstruction, the Cancer Support Community surveyed 1,185 women diagnosed with breast cancer. Women answered questions either: online (n = 840) in August, 2010; or via paper and pencil (n = 345) after attending a breast reconstruction workshop held at multiple sites nationwide in 2011. In addition to demographics, and diagnostic and treatment history, women reported their decision regarding reconstruction, experience searching for and receiving information, and expectations about reconstruction. Respondents were primarily Caucasian (81.9%), and the mean age at diagnosis was 48.9. 21.2% of respondents were first diagnosed with breast cancer in the past year, and 30.0% were diagnosed at least five years ago. Online respondents were more likely to be Caucasian, less likely to have been recently (less than one year) diagnosed with breast cancer, and more likely to have already made a decision regarding reconstruction, as compared to workshop attendees, but were similar in all other respects for these analyses. Most respondents (57.3%) had either undergone or had decided to undergo breast reconstruction. 18.4% of respondents reported they decided not to undergo reconstruction, and 8.9% reported they were not eligible. Additionally, 15.5% of respondents were currently considering or planning to consider their options for reconstruction at a later time. Of the women who were currently considering or planning to consider breast reconstruction, information-seeking patterns and informational needs were reported. Aside from their health care team, most women sought additional information about reconstruction from other women with breast cancer (40.9%), medical literature (46.0%), patient support groups (35.6%), friends and family (41.3%), and the Internet (57.2%). Over one-third of respondents considering reconstruction (34.5%) would have liked to have had more information about the risks and benefits of reconstruction at the time of mastectomy versus at a later time. These women also reported a number of factors influencing their current point in the decision-making process, including: concerns about implant safety (83.3%); concerns about additional treatment and recovery (85.5%); concerns about failed procedures (91.5%); and confusion about the reconstruction decision-making process (72.2%). Survey responses suggest women considering breast reconstruction have a variety of informational needs, some of which are not being met. Results suggest there is still work to be done with regard to establishing realistic expectations about the procedures and outcomes, providing comprehensive information at various stages throughout the process, and across the various choices. Citation Information: Cancer Res 2012;72(24 Suppl):Abstract nr P6-09-10.

P4-15-03: Patient-Provider Communication and Patient Informational Needs for Breast Reconstruction Post-Mastectomy: Results from a National Survey.

For many women, the complexity of processing and learning about their breast cancer diagnosis is further complicated by decisions to be made about breast reconstruction post-mastectomy. Existing studies suggest that these women are provided with information about breast reconstruction options of differing depth, breadth, and quality, but little is known about how this information is received by the patient as well as the value of this information. Guided by Social Cognitive Theory, the Cancer Support Community (CSC) conducted a national survey in an effort to better understand patients’ information-seeking experiences, patient-provider communication, and knowledge about breast reconstruction. 840 U.S. women with breast cancer (762 eligible for breast reconstruction who were then eligible to answer survey questions pertaining to their experiences) participated in the survey online or by paper-and-pencil at CSC affiliate sites in 2010. In addition to demographics, information about their diagnosis, treatment, and experience with reconstruction, women rated their experience with receiving breast reconstruction information from their healthcare professionals as well as their experience searching for and receiving information about options and realistic expectations for breast reconstruction. Survey participants came from 46 states, were primarily Caucasian (85%), and the mean age at diagnosis was 48.9 years old. Most women reported that either a plastic surgeon (73.3%) or a breast surgeon (64.0%) had spoken to them about reconstruction, followed by oncologist (34.2%) and surgical oncologist (24.8%). Of women whose healthcare team had spoken with them about reconstruction, 57.1% reported that reconstruction was first discussed at diagnosis. Women reported that this information was somewhat (35.1%) or extremely (55.5%) useful, though they sought additional information elsewhere. Aside from their health care team, most women (60%) sought information about reconstruction from other women with breast cancer and half sought information from the Internet. Participants reported that they would have liked to have had more information prior to reconstruction about a variety of topics, including: how they would look after reconstruction (34.8% endorsing), how they would feel after reconstruction (35.5%), and information about their future breast health (25.9%). Open-ended responses suggest many patients experience gaps in information with regard to establishing realistic expectations about the procedures and outcomes, providing comprehensive information at various stages throughout the process, and across various treatment options. Though many participants reported satisfaction with how information about reconstruction was provided to them and the quality and scope of this information, responses suggest that there is work to be done with regard to establishing realistic expectations about the procedures and outcomes, providing comprehensive information at various stages throughout the process, and across various treatment options. Citation Information: Cancer Res 2011;71(24 Suppl):Abstract nr P4-15-03.

PD06-10: Breast Cancer Patient Distress Associated with Difficulties Navigating the Costs Associated with Care: Results from a National Education Program.

Compounding the stressors related with a diagnosis of breast cancer can be the associated direct and indirect costs of cancer care. To address this need, the Cancer Support Community (CSC) in 2009 developed an evidence-based, professionally-led national education workshop for cancer patients and caregivers entitled Frankly Speaking About Cancer: Coping with the Cost of Care. As part of this workshop, participants completed a survey describing their experiences coping with the cost of cancer care. To date, responses from 465 participants (representing 46 workshops) have been analyzed. Of those participants, 105 are women diagnosed with breast cancer. Though workshop participants were affected by a wide variety of cancer diagnoses, half of those with cancer attending the workshop (50%) were affected by breast cancer. No significant differences between breast cancer patients and individuals with other cancers were found. Analyses are based on responses from breast cancer patients only. Participants’ pre-workshop rating of their understanding about the financial aspects of their breast cancer care was low ( m =2.8, s.d. =1.0) and was significantly less than their level of knowledge post-workshop ( m =4.1, s.d. =0.7, p Most attendees (72.8%) reported experiencing some degree of emotional distress from trying to manage cancer care costs, and nearly one-third of attendees (30.1%) reported significant distress. Most (64.8%) reported that their healthcare team did not discuss financial aspects of care with them. Of attendees whose team did discuss it with them, typically it was a social worker, physician, or nurse. Of those who had this discussion, only 34% reported that this information was actually useful to them. Not surprisingly then, attendees reported they have looked elsewhere for information about managing the costs of care, such as patient support organizations (40.2%), the Internet (43.5%), and other patients (41.3%). A positive to arise from the workshop is that most participants (69.9%) reported the intention to discuss financial aspects of their care with their healthcare team based on what they had learned from the workshop. Intention to have this discussion with their healthcare team was both positively correlated with having experienced emotional distress about the cost of their care ( r =.29, p r =-.28, p Citation Information: Cancer Res 2011;71(24 Suppl):Abstract nr PD06-10.