African-American women who survive a breast cancer diagnosis face a variety of challenges, a new study reveals, beginning with a widespread distrust of the medical community.
The study, “Post-treatment problems of African American breast cancer survivors,” published in the journal Supportive Care in Cancer, found that many African-Americans felt that the information they received was inferior to that given Caucasian breast cancer patients.
The research team at the Thomas Jefferson University in Philadelphia is now working to create better care plans for the African-American breast cancer community, hoping to address the challenges reported in the study.
It’s first author, Andrea Barsevick, PhD, a registered nurse and a Professor in Medical Oncology and researcher at the Sidney Kimmel Cancer Center at Thomas Jefferson, noted that fewer African-American than Caucasian women survive for longer than five years after their breast cancer diagnosis — 79 versus 92 percent.
“We wanted to explore whether the problems they experience after their first round of treatment might contribute to that disparity,” said Barsevick in a news release.
Researchers started by conducting eight focus groups, including 60 African-American women who had survived breast cancer, to get an idea of the challenges they experienced. It was here that the issue of medical mistrust came up, and it did so in all eight groups, showing that the problem was common.
The women believed that the information they received after completing treatment was inferior to that given to women of European descent, making them less prepared to deal with the challenges ahead.
Researchers used the results from the focus groups to improve a survey of survivor issues, adding 20 new questions that included issues of medical mistrust.
The survey was completed by 297 women, and showed that the difficulties experienced could be grouped into four types: physical, emotional, resource, and sexual. The importance of the types of problems varied among the women. Younger women reported more issues than older women, as did those who had two or more chronic illnesses in addition to cancer.
This does not necessarily imply that survivor difficulties are caused by mistrust, or that younger women are at greater risk of experiencing such difficulties, according to Amy Leader, an assistant professor of Medical Oncology and research at the Sidney Kimmel Cancer Center, who was a study co-author.
“The associations aren’t causal, but they do show us how much diversity there is within the African American women as a group, and that it will be important to craft different approaches to address the needs of different parts of the community,” said Leader, adding that educational material, nevertheless, may need to both be culturally tailored to African-Americans, and adapted to different age groups.
In collaboration with local advisers, Barsevick and the rest of the research team is now working to create a survivorship care plan addressing the concerns of African-American women.