A social ecological study of access to breast cancer survivorship services.

Abstract

31 Background: Survivorship research has largely focused on the survivorship care plan and the transition back to primary care. Long-term survivor service needs remain understudied, particularly in the fragmented healthcare systems where many Americans receive their care. While numerous services support breast cancer patients through treatment, there is a sharp drop-off once treatment has been completed. This study investigated survivors’ post-treatment service access and use in a geographically dispersed, medically underserved population. Methods: Using a social ecological framework to analyze the interplay of individuals, healthcare facilities, and community resources, this study combined in-depth, semi-structured interviews with survey data from 75 breast cancer survivors across 27 cities in a two-county Affordable Care Act rating area. Interviews focused on challenges of access, available resources, and how resources were used. Surveys recorded service use, referral sources, and unmet needs across 27 services (e.g., psychosocial, financial, lymphedema) and information sources (e.g., online, support group, print materials). Results: Survivors ranged in age from 25 to 87, and 0 years of survivorship (still in active treatment) to 41 years (54% at 5+ years, 27% at 10+ years, and 12% at 20+ years). Access to survivorship services was accomplished in community settings (e.g., breast cancer nonprofits) more often than in medical facilities. In-person support groups were the most widely used resource, even by long-term survivors (over 40% were survivors of 5+ years), and played a key role in providing access to other services and information (e.g., nutrition, yoga). Many survivors addressed the lack of services through resourceful do-it-yourself solutions. Nevertheless unmet needs remained across the service spectrum. Conclusions: Community-based resources were pivotal in enabling access for a dispersed, underserved population and may serve as high-leverage points for interventions in healthcare systems. Research was supported by the National Cancer Institute of the National Institutes of Health under Award # F31CA192478.