Low health literacy (LHL) is increasingly recognized as an important driver of cancer disparities, and given that one in five Americans lack the necessary literacy skills to function adequately in our health care system, this is a burgeoning public health crisis. Adults with LHL are less likely to use preventive services, less likely to undergo cancer screening, and have higher mortality. Mammography screening decisions, which increasingly call for shared-decision making between patient and physician, is an exemplar of where communication challenges are most likely to affect outcomes for LHL populations. Informed decisions for breast cancer screening that account for individual risk of developing breast cancer and patient preferences are recommended by professional guidelines for women aged 40-54 for whom the harms of screening can exceed the benefits. While mammography screening is estimated to reduce breast cancer mortality by 15% for women in their 40s, screening in younger women has high rates of false positives (40-60% over ten years) and substantial estimates of over-diagnosis (15-48% of those screened). Data consistently show that communication about mammography screening inadequately prepares women for these outcomes and there are widespread misperceptions about mammography and its utility among women making screening decisions. While literacy is a known barrier to receiving mammography, there are currently no decision tools to help women with LHL with their decision-making. Therefore, the goal of this training and research program is to develop the necessary knowledge and skills to create and test a novel decision aid to increase informed breast cancer screening decisions for women ages 40-54 with LHL. Training will cover four essential domains: 1) Community-Engaged Research Methods; 2) Tools to Improve Informed Decision-Making; 3) Low Literacy Populations; and 4) Patient-Centered Outcome Assessment. The knowledge gained through didactic training and one-on-one mentoring will support three proposed Research Aims. First, I will engage multiple stakeholders, including women with LHL (n=25) and their clinicians (n=20), in qualitative interviews to understand and characterize their decisional preferences and identify outcomes that matter most. Second, I will construct a multi-media decision aid appropriate for use with women with LHL ages 40-54. An expert panel (n=10) will assist in evaluating the acceptability of evidence based content for inclusion, and women with LHL will provide input on tool acceptability and pilot outcomes via cognitive interviews and a survey (n=30). Third, I aim to assess the impact of the decision aid on decision-making outcomes (decisional conflict, knowledge, shared decision-making) and screening intentions through a pilot pre-test/post-test study among 50 women and their primary care providers. This work will launch my career as an independent investigator trained to design and disseminate patient-centered decision supports that help to optimize the delivery of cancer screening services for those with LHL.
Literacy is a critical aspect of disparities research, and is particularly salient when aiming to support and improve decision-making in health care. This research will develop and test a multi-media decision aid for breast cancer screening with an explicit focus on the needs of women with low health literacy using community engaged methods, thus enhancing its translational potential. It will provide novel data on individual experiences with informed decision-making and the effects of a decision aid on patient-centered outcomes among a low health literacy population.
