Modifying a Mammography Decision Aid for Older Adult Women with Risk Factors for Low Health Literacy

BACKGROUND: Guidelines recommend that before being offered mammography screening, women age 75 years and older be informed of the uncertainty of benefit and potential for harm (e.g., being diagnosed with a breast cancer that would otherwise never have shown up in one's lifetime); however, few older women are informed of the risks of mammography screening and most overestimate its benefits. OBJECTIVE: The aim of this study was to learn from women older than age 75 years who have predisposing risk factors for low health literacy (LHL) how they make decisions about mammography screening, whether an existing decision aid (DA) on mammography screening for them was acceptable and helpful, and suggestions for improving the DA. METHODS: We conducted semi-structured interviews with 18 women who were between ages 75 and 89 years and had predisposing risk factors for LHL (i.e., answered somewhat to not at all confident to the health literacy screening question “How confident are you filling out medical forms by yourself?” and/or had an education level of some college or less). KEY RESULTS: Findings indicate that women in this study lacked knowledge and understanding that one can decide on mammography screening based on their personal values. Women were enthusiastic about screening based on an interest in taking care of themselves but rely on their providers for health care decisions. Overall, most women found the DA helpful and would recommend the use of the DA. CONCLUSIONS: Findings from this study provide formative data to test the efficacy of the modified DA in practice. Failing to consider the informational needs of adults with LHL in design of DAs could inadvertently exacerbate existing inequalities in health. It is essential that DAs consider older women's diverse backgrounds and educational levels to support their decision-making. [HLRP: Health Literacy Research and Practice. 2021;5(2):e78–e90.] PLAIN LANGUAGE SUMMARY: The goal of this research was to understand how women older than age 75 years with risk factors for low health literacy made decisions about getting mammograms, whether an educational pamphlet was helpful, and suggestions for improving it. This research helps in understanding how to involve this population in the process of designing patient-related materials for mammogram decision-making.