The MEDaphor Project: Assessing Readability of Novel Cancer Education Materials with Focus on Patients with Limited Health Literacy

Purpose: Health literacy is the ability to obtain and understand the basic health information needed to make an appropriate health decision. Between one-third and one-half of adults in the United States have limited health literacy, with disproportionate numbers in racial/ethnic minorities, elderly, and low income populations. Low health literacy is a known predictor of poorer outcomes, including mortality and hospitalization. National efforts have focused resources to improve patient education, with recommendations to keep educational material at a 6th to 8th grade reading level. However, most available materials are written at 11th to 12th grade reading levels, according to scales such as the Flesch-Kincaid scale and Simple Measure of Gobbledygook (SMOG) Index. Inaccessibility of understandable health educational materials exacerbates inequities in healthcare. We aim to create novel scripts that explain cancer biology and treatments at a 6th to 8th grade reading level or lower.

Methodology: We developed novel scripts which use a story-based metaphor in order to demonstrate concepts of cancer biology and the main cancer treatments, including surgery, chemotherapy, and radiation. We assessed reading level using the Flesch-Kincaid Grade Level score and SMOG Index, which are commonly used for general readability scoring. Additionally, we evaluated the scripts using the Powers Sumner-Kearl Formula and Revised Spache Readability Formula, which are known to be more sensitive for elementary level grades.

Results: The cancer biology and cancer treatments scripts had a Flesch-Kincaid Grade Level score of 5.8 and 6.1, respectively. The SMOG Index was 5th grade for both scripts. With regards to readability formulas that focus on elementary age levels, the Powers Sumner-Kearl score (grade level) was 4.6 for the cancer biology script and 4.7 for the treatments script. The Revised Spache Readability Formula rated both scripts at a 4th grade reading level.

Conclusions: Our novel patient education materials met our goal of a 6th to 8th grade reading level for adult patients, rating in the 5th to 6th grade range in commonly used readability formulas. On elementary-specific formulas the scripts rated at a 4th grade level, suggesting that these may be an understandable resource for children who are learning about cancer. Next steps include translating the script into multiple languages, including Spanish, obtaining direct patient feedback via focus groups, and developing illustrations for multimedia learning. Our ultimate goal is to create accessible, understandable educational resources in the form of cartoon animations and children’s books that empower patients and their families to take an active role in their health.

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Li ZH, Wang M, Ingledew PA. Depression in cancer: quality assessment of online patient education resources. Psycho-Oncology. 30:400-407. 2021.