Misalignment of breast cancer beliefs and scientific evidence

From the Public Health Sciences and Clinical Research Divisions

Late-stage detection and delayed treatment are major contributors to poor breast cancer survival rates in low- and middle-income countries (LMICs). Improved breast cancer education programs could lead to earlier breast cancer detection and improved outcomes. The Breast Health Global Initiative (BHGI) is an international organization that aims to improve breast cancer outcomes in LMICs. As a basic-level intervention, BHGI guidelines support the use of breast cancer education programs that are culturally appropriate and understand local beliefs about breast cancer. This is important because personal beliefs can drive health-related behaviors, including the decision of when to seek medical care. In Uganda, an average of two years pass before women seek medical attention after self-detection of a breast lump; the extended delay may be due to incorrect beliefs about breast cancer. Researchers from the University of Washington, Seattle Cancer Care Alliance, and the Public Health Sciences and Clinical Research Divisions at Fred Hutch report on breast cancer beliefs of Ugandan women in a recent publication in the Journal of Global Oncology.

In Uganda, many educational materials used for breast cancer education programs are developed from Western countries while only a limited amount of material has been generated from studies conducted in sub-Saharan Africa. Such studies revealed that many women fear cancer-related social stigma and have strong breast cancer beliefs that are not supported by scientific evidence. “Many incorrect beliefs about breast cancer persist despite the grassroots and national efforts to improve breast cancer awareness and education. Some erroneous beliefs are so prevalent, such as carrying items in bras causes breast cancer (>90%), that they need addressing before changes in breast cancer detection and treatment practices will occur,” said Dr. John Scheel, Associate Professor of Radiology at the University of Washington and lead author of the new study. Co-author and Fred Hutch Public Health Sciences Member Dr. Beti Thompson further emphasized the importance of understanding women’s misconceptions, “As breast cancer rates increase in low- and middle-income countries, we find a great deal of misinformation about breast cancer as well as barriers to treatment such as limited treatment facilities. It is imperative that we better understand such beliefs and attitudes so we can give women in these countries the best possible treatment available to them.”

Previous studies of breast cancer beliefs were limited by the lack of assessment of demographic factors that may influence the timing in which women decide to get medical care. Assessment of these factors could also help identify subpopulations with strong misconceptions about breast cancer and could lead to more targeted breast cancer awareness programs. In addition, all the current data were collected from breast cancer survivors – women who overcame barriers and were treated early enough to survive. The authors sought to address the existing gaps by conducting an interview-based study that included women in rural and urban areas of Uganda. To ensure cultural appropriateness of the study, the authors collaborated with the Ugandan Women’s Cancer Support Organization (UWOCASO); this partnership involved local Ugandan breast cancer survivors in all aspects of the study design, conduct, and interpretation of results. The study survey was carefully designed to assess women’s beliefs about breast cancer and included questions about cultural and scientific explanations for development of breast cancer and beliefs related to the benefits of early detection. The survey also assessed socioeconomic factors, access to health care, prior breast cancer knowledge, and personal detection practices.

Graphical representation of categorization of most important perceived cause of breast cancer among Ugandan women.
Categorization of most important perceived cause of breast cancer among Ugandan women. Image provided by Maggie Burhans

Approximately 400 women completed the anonymous survey. Belief in or uncertainty of cultural explanations for the development of breast cancer, such as those related to carrying money or cell phones in the bra or sharing bras were highly prevalent, indicated by nearly 95% of women surveyed. In contrast, a minority of women surveyed believed breast cancer risk factors backed by scientific evidence, such as being overweight or having a first child after the age of 30. In addition, only 45% of women correctly believed that breast cancer can occur in women younger than age 40. The authors also found that prior breast cancer education was not associated with significant differences in beliefs. Indeed, all participants indicated belief in at least one incorrect cultural explanation for the development of breast cancer. When asked about the most important cause of breast cancer, approximately 69% of women responded with a cultural belief based explanation while only 17% responded with a scientific based explanation (see Figure). In the assessment of whether demographic factors are associated with breast cancer beliefs, the authors found that they are largely independent, with the exception of a significant association between no prior breast cancer education with a cultural belief, carrying a cell phone in the bra causes cancer.

Strong fatalistic attitudes were identified in the questions related to early breast cancer detection. Although 61% of women responded that they believe breast cancer can be successfully treated in many women, nearly 80% of women indicated that they automatically think of death when they think of breast cancer. Dr. Scheel summarized these findings, “Most Ugandan women believe that early detection of breast cancer will save lives; however, many simultaneously believe that once they self detect a mass survival will not occur. Women need to know that they can survive breast cancer if they present for a medical evaluation soon after self detection.”

A strength of the study was the involvement of UWOCASO volunteers. Interaction with breast cancer survivors may help allay the fatalistic attitudes common among Ugandan women. “Breast cancer survivors can play a critical role in educating women that breast cancer caught early is both treatable and potentially curable. As living proof that early diagnosis and treatment works, survivor advocates can communicate with the community in a way that the medical community cannot. In addition, breast cancer survivors can help women navigate the complex health care systems and avoid delays,” said Dr. Ben Anderson, study co-author and Fred Hutch Public Health Sciences member.

The findings from this study have clarified the understanding of factors that may contribute to the delay in seeking medical care after detection of a breast lump, as cultural misconceptions of risk factors for the development of breast cancer and fatalistic attitudes are highly prevalent among Ugandan women. “We understand the physical and psychological journey of women with breast cancer who make it to the single cancer treatment hospital in the capital city, Kampala. Also, with our current larger (Attitudes on Breast Cancer Surveillance and Knowledge; ASK survey) study, we now understand early detection practices in Ugandan women without breast cancer,” said Dr. Scheel. When asked about follow-up studies, Dr. Scheel indicated that “The next step is to understand the journey Ugandan women with breast cancer make to a diagnosis. We also need to understand what factors influence the 86% of women with breast cancer who never make it to the treatment hospital.”

Cancer Consortium authors include John Scheel, Benjamin Anderson, Donald Patrick, Julie Gralow, and Beti Thompson.

This research was supported by the National Cancer Institute and American Roentgen Ray Society Scholar and GE Healthymagination awards.

Scheel JR, Molina Y, Anderson BO, Patrick DL, Nakigudde G, Gralow JR, Lehman CD, Thompson B. 2018. Breast cancer beliefs as potential targets for breast cancer awareness efforts to decrease late-stage presentation in Uganda. Journal of Global Oncology. doi: 10.1200/JGO.2016.008748