Despite the internet being a common place breast cancer patients seek information, navigating this Wild West of content can be challenging. The present study analyzed open-ended data from breast cancer survivors (n = 77) regarding their online information seeking behaviors when looking for breast cancer information to help inform the creation of improved online educational materials. Participants were asked what prompted them to seek information, which websites and search terms they used both before and after diagnosis, what information was useful, what misinformation was found, and what they would like to see improved. Results indicated symptoms, tests, or diagnoses prompt women to seek breast cancer information online, and that many different search terms and websites are used. More search terms and websites were utilized after diagnosis compared to before diagnosis, but the most common search terms and websites did not change much from before to after diagnosis. Cancer specific and general medical websites were the most popular. The most useful information related to treatment, obtaining information from other breast cancer survivors, statistics, and positively-valenced information. Though misinformation was not reported by many participants, some mentioned outdated survival rates, inaccurate information about alternative treatments, and other breast cancer patients' experiences that did not align with their own. Participants desired improvements in treatment information, more factual information, a guide, and information that is easy to understand. Creation of a guide and use of search engine optimization to help breast cancer patients navigate this online information could be beneficial.
Keywords: Information seeking; Misinformation; Online; Search terms; Websites.
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