Abstract P6-09-09: Perceptions of marginalization in those affected by advanced breast cancer.
Authors: Ahmed I , Harvey A , Amsellem M 
Published: August 2014

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 program's 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 program's 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 (χ2= 13.2, p &lt;.01). Caregivers of advanced breast cancer patients were equally as likely as patients to endorse that those with advanced breast cancer have unique, unmet needs.

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.