Assessment of Online Patient Education Materials for Pancreatic Neuroendocrine Tumors

BackgroundIncidence of Pancreatic Neuroendocrine Tumors (PNET) has increased in recent decades. In navigating health diagnoses like pNETs, patients are increasingly turning to the internet for information. This study aims to provide a comprehensive overview of Patient Education Materials (PEMs) specific to pNETs using 6 primary criteria for evaluation: Quality, Understandability, Actionability, Readability, Comprehensiveness/Adherence to clinical guidelines, and Accountability.Methods36 unique web pages were selected using 9 different web browser/search engine combinations. Quality was evaluated using the DISCERN instrument, understandability and actionability with the PEMAT-P tool, readability with the Flesch-Kincaid Reading Ease algorithm, and comprehensiveness/adherence to clinical guidelines and accountability with author generated criteria. Scores were categorized based on affiliation to either a foundation, academic, or commercial publishing source, and by search position.ResultsOf the 36 web pages evaluated, 8 were published by foundations, 23 by academic sources and 5 by commercial sources. The mean understandability score for all sources using PEMAT-P was 75.45% (SD 10.89%), and actionability was 19.44% (SD 25.25%). The mean Flesch-Kincaid Reading Ease Score for all sources was 46.11 (SD 12.71), equivalent to a college reading level. Additionally, significant differences were found between the accountability scores for foundation (mean 1.75, SD 1.75), academic (mean 0.87, SD 1.49), and commercial (mean 3.2, SD 0.82) categories.DiscussionThis study reveals many shortcomings of online PEMs for PNETs, including average reading grade level and PEMAT-P actionability scores well below recommended standards. Academic web pages also demonstrated the lowest accountability scores to a statistically significant degree, indicating a need for that category of sources to increase transparency on author information and sources.