Medical Mistrust, Lack of Information, Among Concerns of African American Breast Cancer Survivors

Andrea Barsevick, PhD, RN

Andrea Barsevick, PhD, RN

Life after treatment for breast cancer can be difficult for any survivor. However, a recent study found that African American breast cancer survivors experience some specific concerns and risk factors that healthcare practitioners should be aware of when developing survivorship care plans for this population.

African American breast cancer survivors (AABCS) have a lower 5-year survival rate across all disease stages (79%) versus 92% for Caucasian breast cancer survivors. Additionally, AABCS often have more aggressive forms of breast cancer and require multimodal treatment, leading to a greater risk of late and long-term effects.

Although there is some overlap, past research has shown that the challenges faced by African American breast cancer survivors differ somewhat from Caucasian women. To study these differences in more depth, researchers at the Thomas Jefferson University Sidney Kimmel Cancer Center adapted the Cancer Problems in Living Scale to determine the number, severity, and domains of problems faced by AABCS within 5 years of completing treatment. Twenty items were added to the survey, based on recommendations of 8 focus groups; in all, 51 survivor concerns were evaluated.

Medical mistrust—the perception of African Americans that healthcare providers treat them differently than their white counterparts—was among the items added to the survey. This mistrust results in a belief among AABCS that they are receiving less information or information that is inferior to that which is provided to Caucasians, according to llead study author Andrea Barsevick, PhD, RN, a professor of Medical Oncology and researcher at Sidney Kimmel Cancer Center at Jefferson, in an interview with Oncology Nursing News: “There’s this component of, ‘Does this healthcare provider or does this healthcare system have my best interest at heart? Do they value me as a person?’” Because of this widely-held cultural experience, she said, the research found that AABCS often feel that they have to advocate more strongly for themselves.

Surveys were mailed to a random sample of African American women drawn from the Pennsylvania Cancer Registry who were aged ≥18 years and 3-5 years post-diagnosis and (n = 1056). Mean age of participants was 57.5 years. A total of 297 surveys were returned, with a median number of 15 survivor problems reported. Their responses were compared with a sample of survivors with mixed cancer diagnoses.

Researchers grouped survivor problems into 4 categories of concern: emotional, physical, resource, and sexual. The results suggest that younger women, women with more comorbid conditions, and women with a greater level of medical mistrust are all at risk for more severe problems.

Additionally, the researchers found concerns about sexuality and an overall lack of information resources that were unique to AABCS, though Barsevick clarified that the issue of sexuality was unique when compared with a “large study of mixed cancer diagnoses, both men and women … If you conducted a study of just Caucasian breast cancer survivors, probably sexuality would come up then, too.” Nonetheless, Barsevick encouraged nurses to not hesitate to raise sexual health as part of their survivor assessments and to stay abreast of “the best available evidence and have it ready to give out.”

Concerns among AABCS over a lack of resources had both informational and financial components, with some women in the focus groups discussing difficultly with copays and medical supplies, for example. In the area of informational resources, Barsevick explained that there seemed to be a lack of knowledge when it came to such issues as triple-negative breast cancer, which is more common in African Americans, as well as skin and hair changes. Some participants in the focus groups described “doctors really not understanding: Is it different for African Americans?”

The researchers hope that their findings will lead to intervention research focused on AABCS’ needs and the development of multifaceted programs culturally tailored to African American survivors that will better serve those needs. Barsevick stressed the importance of including people of color in programs developed by “lay navigators, or patient advisory committees … to help identify trust issues and help with what can be done to repair them.”

“Survivorship care really needs to be about psychosocial care as well,” she continued. By taking into account risk factors revealed in this study, such as younger age, the presence of cormorbid conditions, and a greater sense of medical mistrust, Barsevick believes that providers can better, “identify patients that may be at risk for more severe problems—those who may need extra care, more information, more resources, and more opportunities to tell their story.”

Barsevick and her research team are putting together a tailored survivorship plan to serve as an adjunct to a standard survivor care plan in order to take survivorship care a step farther for AABCS. The plan would include women of color in the visuals and voice, along with addressing the concerns the researchers found were important to AABCS. Barsevick said the aim of such interventions is not only to provide information, but to teach women skills. “so that the survivor can work independently and collaboratively with her healthcare provider.”

Researchers hope that better resources will lead to increased self-efficacy within this population, reduced cancer disparities, and improved health outcomes, with a focus, concluded Barsevick, on “what are the problems that these women experience and what can we do to mitigate them?”

Reference

Barsevick AM, Leader A, Bradley PK et al. Post-treatment problems of African American breast cancer survivors [published online ahead of print August 19, 2016]. Support Care Cancer