The Audacity to Say People Have Low Literacy Skills When Materials Are Poorly Designed: An Assessment of a Modified Mammography Screening Decision Aid

Background and Purpose: Health literacy is a problem in the US, especially among underserved and underrepresented older adult populations. Approximately 39% of US adults older than 75 have limited health literacy levels. Health literacy is a social determinant of health and low health literacy is associated with lower participation in medical decisions. Decision aids (DAs) increase patient knowledge and prepare patients to participate in medical decisions. However, most DAs are written at too high literacy for patients with low health literacy. Since mammography screening is associated with an uncertain chance of benefit among women aged 75 and older and a chance of harm from false positive tests and overdiagnosis, a DA was developed to help these women with decision making around screening. However, the DA was too high literacy for some older women. Therefore, we modified a previously developed DA for use with older women with low health literacy based on their feedback and cognitive testing. We now aim to explore the reading level of this modified DA using multiple methods.

Methods: The DA’s literacy level was explored using four assessment tools. 1.Simple measure of gobbledygook (SMOG); 2. PMOSE/IKIRSCH; 3. Centers for Disease Control and Prevention (CDC) Clear Communication Index; and 4. Patient Education Materials Assessment Tool (PEMAT). The SMOG assesses reading grade level. The PMOSE/IKIRSCH assesses for document complexity and focuses on the structure and density. The CDC Index provides a comprehensive literacy demand score and the PEMAT assesses actionability (how well readers will know what to do after reading the material) and understandability. The assessments were completed by two independent raters. Consensus was reached.

Results: The SMOG scores indicated a 9^th grade reading level. The PMOSE/IKIRSCH score was 4 suggesting very low complexity level, such that populations with skills equivalent to grade levels 4 to <8 could understand the materials. The CDC Index score was 95%; a score of >=90% indicates the materials easier to understand and use. The PEMAT understandability and actionability scores were 83% and 71% respectively. Scores closest to 100% suggest readers will be better able to understand and act on the information.

Conclusions and Implications: Overall scores for this comprehensive health literacy assessment suggest that the modified DA is appropriate for the average, older than 75 years of age U.S. adult, but also for those populations that may have underdeveloped literacy skills. Assessing materials to ensure they meet health literacy standards is an important piece of reducing health inequities. Further, patient-centric decision support tools can help marginalized patients participate as full partners with their providers. Providers and institutions must take responsibility to structure inclusive, collaborative decision-making processes with patients to ensure that patient’s values, concerns, and goals for health care decisions are incorporated.