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Information Disparity a Major Concern of Breast Cancer Survivors


Researchers at the Sidney Kimmel Cancer Center collated concerns of African American breast cancer survivors to find that medical mistrust was a commonly raised issue.

Researchers at the Sidney Kimmel Cancer Center at Thomas Jefferson University created focus groups to interview breast cancer survivors to better understand their experiences and challenges following cancer treatment. An important concern expressed by women across the board was the problem of medical mistrust.

The current study was designed based on documented evidence of disparity in survival among African American women (79%) compared with Caucasian women (92%) across all stages of breast cancer. Additionally, the quality of life of African American women post treatment could be worse due to the more aggressive form of their disease that might need multimodal treatment.

“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,” Andrea Barsevick, PhD, RN, professor in Medical Oncology, researcher at the Sidney Kimmel Cancer Center, and lead author of the study, said in a statement. "We wanted to explore whether the problems they experience after their first round of treatment might contribute to that disparity."

The authors of this study, published in the journal Supportive Care in Cancer, conducted an assessment of the number, severity, and domains faced by African American breast cancer survivors (AABCSs) during a 5-year period following treatment, to identify subgroups at risk for these problems.

Survivor-driven focus groups of AABCSs were organized by the researchers to understand the problems these survivors faced after cancer treatment. A majority of the 60 participants thought that they had limited access to information compared with Caucasian women, which could leave them more vulnerable to survivorship challenges. The authors used the focus group results to improve a survey that was mailed to more than a 1000 AABCS over the age of 18 years from the Pennsylvania Cancer Registry—nearly 300 of them responded. Based on the responses obtained, the concerns were grouped into 1 of 4 categories:

  • Emotional
  • Physical
  • Resource
  • Sexual problems

An important observation was that the significance of the problem varied among participants: younger women raised more concerns overall while women with 2 or more chronic conditions, other than their cancer, also reported more concerns. Further, women who had greater medical mistrust reported more survivor problem. How do you interpret these results?

“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 study author Amy Leader, DrPH, MPH. She suggested personalizing educational resources based on the age as well as the age of the population that they are aimed for, in addition to being mindful of their cultural beliefs.

To carry this work further, the team is working to develop survivorship care plans tailored to address the needs and concerns of AABCS.


Barsevick AM, Leader A, Bradley PK, et al. Post-treatment problems of African American breast cancer survivors [published online August 19, 2016]. Supportive Care in Cancer. doi: 10.1007/s00520-016-3359-z.

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