Breast cancer treatment: decision-making through a health literacy lens

In recognition of both Health Literacy Month and Breast Cancer Awareness Month, we’re looking at the unmet treatment education needs of people living with breast cancer who experience low health literacy.


Health literacy refers to a person’s ability to understand and use information to make decisions about their health, (1) which tends to be low in the general population, including in people living with breast cancer. (2-6) Evidence suggests that patients with low health literacy don’t have the knowledge they need to engage with healthcare. (3, 7) Furthermore, these patients tend to experience more regret in medical decision-making (e.g. regarding treatment) and poorer health-related quality of life than people with high health literacy. Low health literacy is also linked to lack of adherence to treatment, higher healthcare costs, and increased risk of hospitalisation and mortality. (8, 9)


Upon breast cancer diagnosis, patients face critical treatment decisions. Such decisions can be made more difficult if treatment options are not presented clearly and patients are not given the tools to understand the associated benefits and risks. (10) Despite the importance of communicating such vital information in an accessible manner, material directed at breast cancer patients often fails to consider those with a low level of health literacy. (8) This compromises the effectiveness of such resources; decision aids that do not specifically target people with low health literacy levels often have poor success in improving knowledge and informed decision-making. (11, 12)  Evidently, patient-facing resources should be tailored to the different health literacy levels seen among patients. Ensuring readability, utilisation of media other than text alone, and testing with target groups are just some of the possible strategies for ensuring treatment information is accessible to people with low health literacy. (11, 13)


A key component of engaging patients with health literacy-boosting educational materials is ensuring that such resources are culturally appropriate, as previous experiences and beliefs may shape how individuals interact with these materials. (14) A good example comes from Eli Lilly, who collaborated with science and health resource company Lifeology to create flashcard courses about clinical trials and early breast cancer aimed at Black women. (15) This was a particularly relevant project, as Black cisgender women are at disproportionate risk of low health literacy, which can compromise their ability to access and understand breast-cancer related information. (6, 16, 17) Furthermore, this population is more likely to develop breast cancer before 45 years old and has higher death rates than white women, possibly due to genetic and societal factors (e.g. difficulty accessing healthcare). (18, 19)


This initiative from Eli Lilly and Lifeology is a key example of the increasing efforts to tailor content to populations who might experience low levels of health literacy.(12, 20-22) However, in order to effectively empower women living with breast cancer, initiatives should go further and involve patients directly in the development of educational resources, rather than solely including the target population as end-users. (11) This way, the likelihood that such initiatives are impactful, appropriate, and relevant can be significantly enhanced.


Key takeaway: Despite the importance of communicating vital treatment information in an accessible manner, such material directed at breast cancer patients often fails to consider those with a low level of health literacy. While efforts have been made to address health literacy in people living with breast cancer, Pharma can do more to embrace patients as partners and optimise the impact of such initiatives.



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