Published in:
27-11-2023 | Neuroendocrine Tumor | Brief report
Lost in translation: evaluating the readability of online patient information for neuroendocrine tumors
Published in: Endocrine | Issue 1/2024
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Introduction
Recent data show that many patients with NETs do not receive sufficient education regarding their diagnosis and therefore tend to search for information or literature independently. We sought to assess the readability of OPI for neuroendocrine tumors and to analyze compliance to NIH guidelines for OPI (readability level 8th grade or below).
Methods
We performed a Google search to compile a list of the top ten OPI websites using the search term “neuroendocrine tumor”. We calculated median readability scores for each website across the 9 scales as well as overall readability scores across all sites.
Results
A total of 10 websites were included for analysis. 6/10 (60%) of the websites belonged to academic institutions, while 2/10 (20%) were from non-profit organizations, and 1 each were a government website (10%) and patient advocacy organization (10%). The median (with interquartile range or IQR) readability score for all websites across the nine readability tests was 9.6 (IQR 8.8–11.2).
Conclusion
Our findings underscore the need to develop online patient education material that is readable and therefore easily understandable for patients and caregivers dealing with this unique group of malignancies.