Abstract A119: PR16 Access to breast cancer survivorship care in a medically underserved region: Examining the role of non-medical providers
Authors: Lefkowitz Deborah 
Published: September 2020

Background: The increasing number, and longevity, of breast cancer survivors in the US creates new challenges for survivorship care. Survivorship research has focused on medical and insurance providers but paid little attention to other actors integral to service delivery for breast cancer survivors, particularly in community settings outside of academic hospitals or comprehensive cancer centers. This study examined where, and how, breast cancer survivors accessed survivorship services in a medically underserved region of Southern California, and who were the providers of these services. Methods: Extensive recruitment efforts across California’s two-county Inland Empire (Riverside and San Bernardino counties) enabled inclusion of a diverse group of breast cancer survivors (49% non-white, 12% monolingual Spanish speakers) from metropolitan areas, small towns, and desert communities. Open-ended, semi-structured interviews were audio-recorded with 82 survivors. These interviews focused on survivors’ service needs, how connections with services were made, and where services were obtained. Interviews were also conducted with 84 service providers from 71 organizations, including legal services, financial assistance, patient navigation, prosthesis fitting, lymphedema care, nipple tattooing, nutrition counseling, medical interpreting, transportation, and psychosocial support. Detailed interview transcriptions were coded line-by-line, then analyzed inductively through an iterative process of testing and retesting interpretations against the empirical data, a practice derived from grounded theory. Results: In the Inland Empire community-based nonprofits enabled access for low-income, undocumented, un- and underinsured survivors who might not otherwise have obtained services such as patient navigation, lymphedema garments, mastectomy bras/prostheses, or psychosocial support. These same survivorship services were also provided in medical facilities. But in community-based nonprofits the services were free and typically provided by lay staff/volunteers, while in medical facilities the services were mostly fee-based and provided by licensed healthcare professionals. Conclusion: This qualitative study makes visible the contributions of non-medical providers that remain largely unacknowledged within discussions of survivorship care. It also raises concerns about survivor disparities that warrant further investigation. While quality of care has become a significant concern in oncology, there are no measures for comparing quality across the medical and non-medical settings where survivors obtain services. Filling service delivery gaps with non-medical providers enables access without guaranteeing comparable quality of services and may therefore perpetuate, or even exacerbate, disparities for the most vulnerable survivors. Funding: Research was supported by the National Cancer Institute of the National Institutes of Health under Award #F31CA192478.

Citation Format: Deborah Lefkowitz. PR16 Access to breast cancer survivorship care in a medically underserved region: Examining the role of non-medical providers [abstract]. In: Proceedings of the Twelfth AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2019 Sep 20-23; San Francisco, CA. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2020;29(6 Suppl_2):Abstract nr A119.