Posttreatment Problems Surveyed in African American Breast Cancer Survivors
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 may help identify problems that are important to African American women—a first step in creating programs that better serve the needs of the community, which may reduce cancer disparities and improve health outcomes. The study was published by Barsevick et al in Supportive Care in Cancer.
“We know that 21% of African American women with breast cancer don't survive 5 years past their diagnosis, compared to only 8% 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, PhD, RN, Professor in Medical Oncology and researcher at the Sidney Kimmel Cancer Center at Thomas Jefferson University.
Study Details
In order to understand the experience of African American breast cancer survivors, the researchers conducted 8 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 1,000 African American cancer survivors, 297 of whom completed and returned them (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.”
Study Findings
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).
In addition, the importance of these groups of problems varied between survey participants. For example, younger women reported more concerns overall than older women, and women who had two or more chronic conditions in addition to cancer also reported a higher number of survivor problems. Women with higher levels of medical mistrust also had more survivor problems.
Does this suggest that survivor problems are being caused by mistrust or that younger women are at greater risk for problems than older women? “Not necessarily,” said coauthor Amy Leader, DrPH, MPH, Assistant Professor of Medical Oncology and research at the Sidney Kimmel Cancer Center. “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. For example, different types of educational resources may be needed by younger vs older survivors. And for all of them, educational materials and resources should be culturally tailored to African American survivors.”
“Combating cancer disparities in the African American community will take a multifaceted approach,” said coauthor Patricia K. Bradley, PhD, RN, FAAN, Associate Professor in the College of Nursing at Villanova University. “This research is the first step toward bridging the gap in care after initial cancer treatment is completed.”
“African American survivors have taught us what's important to them,” said Dr. Barsevick. She and her colleagues are now working with a panel of local advisors to create a tailored survivorship care plan that includes resources and coping methods addressing the concerns that are most important to African American women.
The content in this post has not been reviewed by the American Society of Clinical Oncology, Inc. (ASCO®) and does not necessarily reflect the ideas and opinions of ASCO®.
