Assessing the breast cancer survivorship needs among the uninsured and underinsured. Journal of Clinical Oncology

e21577Background: With almost 12 million cancer survivors in the U.S., the Institute of Medicine (IOM) recommends provision of a treatment summary and survivorship care plan (TSSCP) to all cancer survivors. However, there has been limited research on the specific survivorship needs of ethnic minorities. Our study explores the needs of underserved breast cancer survivors in a publicly funded county health care system. Methods: We conducted focus group interviews with underserved breast cancer survivors. Each focus group was led by two facilitators who asked a fixed set of questions that focused on four domains: 1) challenges and side effects of therapy, 2) coping mechanisms, 3) knowledge deficits in the survivorship process, and 4) post-survivorship concerns. Interview recordings were transcribed and analyzed using techniques adapted from grounded theory and content analysis using a qualitative analysis software program. Results: The study conducted six focus groups with a total of seventeen breast cancer survivors, composed of African American, Hispanic, and Caucasian patients. Within the domain of challenges and side effects of therapy, concerns included femininity, body appearance after surgery, and intimacy. When asked about coping mechanisms, the majority of patients primarily relied on spirituality and support from family and church. The theme of spirituality was particularly prominent among the African American and Hispanic cohort. In the domain of knowledge deficits, patients were extremely worried about the risk of recurrence, and several opted for the most aggressive treatments to minimize their recurrence risk. At the same time, patients were generally fearful of receiving chemotherapy, often believing that it is the source of many of their physical complaints. Finally, one of the most prominent concerns was financial stress from medical bills. Conclusions: Uninsured and underinsured breast cancer survivors have specific needs different from the homogenous populations traditionally studied in breast cancer survivorship. Understanding how these needs differ will help us to better construct TSSCP?s for these populations.