Literacy Analysis of Top 10 Most Common Cancer Patient Guidelines by the National Comprehensive Cancer Network
Bao Ngoc N. Tran, MD, Qing Ruan, MD, Sherise Epstein, BS, Rima Rudd, ScD, Bernard Lee, MD, MBA, MPH.
Beth Israel Deaconess Medical Center, Boston, MA, USA.
Background: Cancer information is of critical interest to the U.S. public. The American Cancer Society (ACS) estimates that there will be 1.7 million new cancer diagnoses and 600,000 cancer deaths in 2017 in the U.S alone. The National Comprehensive Cancer Network (NCCN) offers a series of comprehensive patient guidelines on management of the most common cancer diagnoses. These are available online and generate over 4 million views annually. The objective of this study was to assess the health literacy demand of NCCN patient guidelines for the top 10 most common cancers in the U.S. Methods: We identified the ACS's top 10 most common cancers in the U.S. for which there were NCCN patient guidelines. These included malignancies of the breast, prostate, lung, colon/rectum, skin, kidney, pancreas, ovary, and blood cells (leukemia and non-Hodgkin Lymphoma). Four validated tools were used to evaluate literacy levels: 1) the simple measure of gobbledygook (SMOG) to assess reading grade level, 2) the Peter Mosenthal and Irwin Kirsch readability formula (PMOSE/IKIRSCH) to assess document complexity, 3) the Patient Education Materials Assessment Tool (PEMAT) to assess actionability and understandability, and 4) the Centers for Disease Control and Prevention's (CDC) Clear Communication Index (Index) to obtain a comprehensive literacy demand score. PMOSE/iKIRSCH, PEMAT, and the CDC Index were scored by three independent raters, and inconsistencies were resolved through collective consensus among raters and senior advisors. Results: Each guideline contained 80-130 pages of materials covering disease pathophysiology, perioperative workup, cancer staging, treatment options, treatment decision-making, and a glossary of terminology. The average reading grade level was 10.4, which is above the recommended 6th grade level. The average PMOSE/iKIRSCH score was 11, corresponding to moderate complexity, requiring some college level education for interpretation. Only one tool, the PEMAT, yielded scores above the benchmarks for high quality materials. The PEMAT understandability, actionability, and overall score were 94%, 83%, and 91% respectively. The average CDC index was 85%, which is below the recommended 90% for appropriate health literacy demand. Conclusion: Overall, the assessment indicates high demand scores for the readability and complexity of the NCCN Patient Guidelines indicating that the materials are not quite suitable for the general U.S. adult population. Further input from patient focus groups to address appropriateness and usefulness is critical. 
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