Patient and caregiver experience with an online, open-access, standardized, evidence-based, cancer drug and supportive care educational platform.
Authors: Jeffrey A Gilreath, James A. Stuart, Brandon Wilds, Mimi Lo, Anthony Greenly, Haopeng Liu, David D. Stenehjem
Journal: Journal of Clinical Oncology (2021)

e18811 Background: An open-access, web-based platform was developed to provide standardized, evidence-based information, that is cancer regimen-specific and supportive care focused. Online content was provided in the English language only for more than 200 anti-neoplastic regimens. A survey was conducted to determine reasons adult patients and their caregivers seek internet-based cancer drug information, and to evaluate if there is an unmet need for improved oncology therapy education. Methods: Between February 2020 and January 2021, patients and caregivers completed an online anonymous, English language survey deployed on the website www.chemoexperts.com. Results: A total of 1,021 website users responded. The majority of users were from North America (75%). Female respondents comprised 65% of the population and users self-identified as being a patient (67%), or family member/caregiver (33%). The mean age of respondents was 60.7 years (+ 16.2). Roughly two-thirds (66.4%) had a college degree. The majority of respondents reported they were either currently receiving (59.6%), or planning to receive (27.4%) treatment, however patients of all education levels, and in all phases of treatment (before, during, and after) sought online drug information. Clinical drug information education was reportedly provided by a doctor (68.9%), nurse (40.9%), physician assistant or nurse practitioner (23.8%), or pharmacist (15%), while 23% did not receive any education from clinical staff. Modes of education received by participants included printed material (73.9%), teaching in person (52.3%), and/or other internet sites (27.5%). Reasons for visiting the website were reported as follows: seeking additional information (92%), did not know what questions to ask (12%), looking at treatment alternatives (10%), forgot to ask questions (5%), not enough information given (11%), not enough time to ask questions (5%), and afraid to ask questions (2%). Respondents could mark all reasons. Among content sections, the percentage of users reported the side effect section as being the most useful. However, section usefulness varied based upon age, phase of treatment, and baseline education level. Overall, 86% reported finding the information they were looking for on the website. Conclusions: The majority of respondents received education from a health care provider, but not all. It is possible that the current pandemic prevented some patients from receiving education when in-person teaching was not available. However, many patients and caregivers still use the internet to seek additional drug information. These data highlight a continued unmet need for patients using online sources when searching for cancer drug and supportive care information. Further work is required to determine whether supplemental online, education can improve outcomes while reducing adverse effects.