(PHILADELPHIA) - Although there is some overlap, past research has shown that the challenges faced by African American breast cancer survivors differ somewhat from Caucasian women. But the studies that demonstrated difference were not designed to explore those challenges in depth. Now new research from Thomas Jefferson University helps identify problems that are important to African American women - a first step in creating programs that better serve the needs of the community, and which could help reduce cancer disparities and improve health outcomes.
"We know that 21 percent of African American women with breast cancer don't survive five years past their diagnosis, compared to only eight percent of Caucasian women. We wanted to explore whether the problems they experience after their first round of treatment might contribute to that disparity," says lead author Andrea Barsevick, Ph.D., R.N., a Professor in Medical Oncology and researcher at the Sidney Kimmel Cancer Center at Thomas Jefferson University. The study was published in the journal Supportive Care in Cancer.
In order to understand the experience of African American breast cancer survivors, the researchers conducted eight focus groups with 60 survivors to learn what was most important to them. One of the ideas that came up in every focus group was the problem of medical mistrust. Women expressed concern that the information they received was inferior to Caucasians leaving them less prepared to deal with survivor challenges after treatment completion.
Findings from the focus groups were used to refine a survey of survivor problems to be distributed to African American survivors. A survey of 31 survivor concerns that had been validated previously was modified to include 20 new items based on the focus group discussions. Questions about medical mistrust were also added to the survey based on concerns raised in the focus groups. The survey was mailed to over a thousand African American cancer survivors, of which 297 completed surveys were returned (a response rate comparable to other studies). Respondents rated problems like, "Feeling less feminine," or "fatigue, loss of strength," or "being treated as different from others," as "not a problem, somewhat of a problem, or a severe problem."
The researchers found that survivor problems reported in this survey could be grouped into four categories of concern: emotional, physical, resource, and sexual problems. Previous research using this survey identified physical, emotional, and economic concerns in a mixed group of cancer survivors (mixed race, gender, and cancer diagnosis).
