Literacy Analysis of National Comprehensive Cancer Network Patient Guidelines
Bao Ngoc N. Tran, MD1,Qing Z. Ruan, MD1,Sherise Epstein, BS2,Joseph A. Ricci, MD1,Rima E. Rudd, ScD2,Bernard T. Lee, MD, MPH, MBA, FACS1
1Department of Surgery, Division of Plastic and Reconstructive Surgery Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, USA; 2Department of Social and Behavioral Sciences, Harvard T.H. Chan School of Public Health, Boston, MA, USA
Background: Cancer information is of critical interest to the public. The National Comprehensive Cancer Network (NCCN) offers a series of comprehensive patient guidelines on management of the most common cancer diagnoses. This study aimed to assess the health literacy demand of NCCN patient guidelines for the most common malignancies in the U.S.
Methods: We identified the American Cancer Society's most common malignancies per annual incidence in the U.S. and their corresponding NCCN patient guidelines. Four validated tools were used to evaluate literacy levels: 1) the simple measure of gobbledygook (SMOG), 2) the Peter Mosenthal and Irwin Kirsch readability formula (PMOSE/IKIRSCH), 3) the Patient Education Materials Assessment Tool (PEMAT), and 4) the Centers for Disease Control and Prevention's (CDC) Clear Communication Index (Index).
Results: 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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