Information and support needs of young Black women with early breast cancer to enable self-management and informed decisions during breast cancer treatment.

Abstract

e12587 Background: Black women with breast cancer are more likely to experience care delays and worse outcomes than White women (Emerson, Cancer ’20). Patient self-management contributes to more timely cancer care delivery and improved outcomes. We interviewed young black women with breast cancer to explore information needs related to their self-management interests and obtain feedback on the independent use of self-management tools developed within the 4R Oncology model. 4R (Right Info/Care/Patient/Time) is an approach to facilitate patient self-management using a Care Sequence plan- a care checklist with a visual depiction of timing and sequence of care, as well as a side effect self-care tool. These tools are typically provided in the clinic, but we aimed to explore if they could be used independently by patients. Methods: The interviewee cohort (N=20) was recruited from the Tigerlily Foundation ANGEL (Advocate Now to Grow, Empower and Lead) patient program. The cohort included Black women, average age 36 (21 to 46), stage I-III breast cancer. The framework approach of qualitative research was used. Results: All women reported information needs not addressed by their providers. Mental wellness and social support information were lacking for 70% (“I never worked with a social worker or anyone to support my mental health”). Most women (65%) wanted more information about breast cancer surgery options and post-surgery drains, bras, pain, and tingling (“before I had my surgery, my doctor didn't tell me all the options I had”). 40% mentioned a lack of reconstructive option information, including how radiation affects implants, “risk of encapsulation” and the long-term impact of having implants “changing them out every 10 years.” A slight majority (55%) desired nutrition and integrative medicine information. About one-third (35%) of women mentioned considerable skin issues during radiation treatment (“I needed skin care, for people with darker skin”). When reviewing a Care Sequence and a side-effect self-care tool, 95% reported they would use them independently if their clinic did not provide them ("I just got general information about breast cancer, I would have preferred a step-by-step process like this"; “This describes what services each role provides, and links to more support”). Most (95%) would have used the side-effect tool ("My chemo education was overwhelming, just a bunch of info thrown at me all at once, having a resource to look at would have been helpful"). Conclusions: In interviews with young Black women with breast cancer we found several information needs and a preference for tools to support self-management during treatment. These indicate considerable improvements are needed in this area. Using the input from the interviews, we are enhancing the 4R Oncology tools to better support the needs of Black patients with breast cancer.