Research suggests that perceiving cancer as a death sentence is a critical determinant of health care–seeking behaviors. However, there is limited information regarding the prevalence of this perception in the US population. Cross-sectional analysis of data (n = 7674 adults) from the 2007–2008 administration of the nationally representative Health Information National Trends Survey (HINTS 3) was performed. A majority (61.6%) of respondents perceived cancer as death sentence, and more than one-third (36%) of respondents reported that they avoid seeing their physicians. In the adult US population, perceiving cancer as a death sentence is common and is associated with education level and avoidance of physicians.
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.
9578 Background: A 2010 NIH study indicates direct cancer care expenditures will reach $158 billion in the U.S. by 2020, impacting millions of Americans. The cost of insurance for a family of 4 has increased from $6000 (2000) to over $16,000 (2011). Medical debt is a significant cause of personal bankruptcy, even if insured. The financial realities posed by costs associated with cancer care greatly complicate a cancer diagnosis. The most recent American College of Physicians Ethics Manual recommends all parties must interact honestly, openly, and fairly. (Snyder L, et al. Ann Int Med 2012, p86) This analysis explores the occurrence and value of patient-provider communication surrounding costs associated with care in a national survey of those affected by cancer. Methods: From 2011-12, 505 individuals attending Frankly Speaking About Cancer: Coping with the Cost of Care workshops completed a survey assessing experiences about the costs of cancer care. This is a Cancer Support Community national evidence-based educational program. All attendees (n=708) were eligible to complete survey. Results: Most attendees (71.3%) responded. The majority (62.4%) were people with cancer/survivors; the remainder included spouses/partners, family members, and 8.7% were health care professionals. Most (80.8%) were Caucasian, and averaged 57.2 years. Of those with cancer, 89.9% were insured at diagnosis. 59.4% reported no one on their health care team initiated a discussion about the financial aspects of their care. Included in this figure, 22.7% actively sought information from health care team, and 36.7% received no information about cost. When topic was initiated, it was by social workers (16.2%), physicians (12.3%), nurses (6.3%) or financial specialists (8.2%). When information was provided, 72.1% found it somewhat or very useful. Also, regardless of provider discussion, respondents independently sought resources for managing costs, such as other patients (44.2%), the Internet (41.5%), and patient support organizations (38.1%). Conclusions: Patients want financial information but do not receive it. These data highlight the need and value of providers initiating a dialogue about the cost of cancer care with patients.
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 program’s 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 program’s 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.
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