Targeting health disparity in breast cancer: insights into women's knowledge of their cancer profile in Malaysia

OBJECTIVE: Poor health literacy is positively associated with poorer quality of health decision-making and health outcomes in women facing a cancer diagnosis. In developing countries, poor access to complete and accurate information continues to pose a challenge for women. This paper describes the knowledge of Malaysian women with regard to breast cancer and how participation in a self-management program can improve the situation.

METHODS: Secondary analysis of data collected during a clinical trial on women newly diagnosed with breast cancer (n=147) was performed to examine baseline knowledge of breast cancer profile. Knowledge levels of women in the experimental (n= 69) group attending a self-management program were compared to a control group (n= 78) to determine change in the level of knowledge over time.

RESULTS: At baseline, a high percentage of women were unaware of their breast cancer profile. Not a single woman had knowledge of all six basic characteristics; 83% did not know their HER2 status, type of breast cancer (68%), grade of cancer cell (64%), hormonal receptor status (55%), size of breast cancer (18%) and/or their stage of breast cancer (13%). At post intervention, there was significantly better knowledge within the experimental group.

CONCLUSION: Malaysian women in this cohort study demonstrated very low levels of knowledge of their cancer profile. Clinical implications for countering treatment-decision difficulties include the need for a shift in the way information and services are delivered to allow women to take a more active role in their own care. Multi-modal efforts including basic information dissemination to increase women's knowledge can contribute to narrowing of the gap in health disparity.