Abstract PO-020: An examination of online experiences among young adult cancer patients and caregivers reveals the pervasiveness and influence of diet and supplement-related misinformation

Abstract

Abstract Purpose: Adolescent and young adult (AYA) patients and caregivers identify unmet information needs as a top priority, in part, because they experience disparities throughout cancer, including higher mortality, financial toxicity, lack of support, and late diagnosis. While the Internet is increasingly used by this population for cancer information seeking, the perception of online information among AYAs is not well studied. We describe AYA patients and caregivers' experiences with online cancer information. Methods: From March-July 2021, we recruited participants via online repositories (e.g., ResearchMatch), posted flyers on social media, and a large AYA conference. We conducted telephone interviews with AYA cancer patients and caregivers who spoke English and were ages 18-39 (N=17). We summarized sociodemographic and cancer factors, then categorized feedback about participant's experiences with 1) cancer information/misinformation and 2) the influence of misinformation on their decisions and behaviors. Results: Average age was 32 years (SD: 3.9), 65% identified as female and 53% had a graduate degree. Daily social media use was common: Facebook (65%), Instagram (65%), YouTube (53%), Twitter (47%), LinkedIn (23%), TikTok (23%), Snapchat (18%) and Pinterest (18%). Participants noted that cancer information on social media is problematic because it is non-specialized, inaccurate and/or unhelpful. Over one-third felt cancer information on social media remains very inaccessible because it is vague or not relevant to their cancer diagnosis (e.g., rare cancers). Three participants experienced unsolicited advice or rude/insensitive comments online, including judgements about delaying treatment or pressure to maintain a toxic positivity about the cancer experience. The majority reported online misinformation focused on diet and lifestyle changes including using essential oils, taking supplements-like ESSIAC (e.g., herbal tea alternative to chemotherapy), changing to a vegan or sugar free diet, and/or drinking alkaline water. Misinformation exposure led participants to engage other online sources (i.e., WebMD) and their healthcare providers to investigate online claims. Some participants experimented with diet-related claims they deemed would have no detrimental effect on their health or treatment (i.e., drinking alkaline water). Participants who experienced unsolicited and insensitive comments blocked the user or unadded them from their personal pages, while one participant chose to completely stop posting their cancer experience on social media. Conclusions: AYAs may be especially vulnerable to online information that seeks to alter their perceptions of cancer, cancer treatment, and cancer caregiving, particularly in the context of lifestyle behaviors. If they felt it was safe, participants acted upon information of questionable legitimacy from social media. Other negative aspects of online cancer interactions influenced caregivers' decisions to leave online support communities and modify relationships with their social networks. Citation Format: Echo L. Warner, Margaret Raber, Ashley Green, Keely Smith, Jennifer Traslavina Jimenez, Terry Badger. An examination of online experiences among young adult cancer patients and caregivers reveals the pervasiveness and influence of diet and supplement-related misinformation [abstract]. In: Proceedings of the AACR Virtual Conference: 14th AACR Conference on the Science of Cancer Health Disparities in Racial/Ethnic Minorities and the Medically Underserved; 2021 Oct 6-8. Philadelphia (PA): AACR; Cancer Epidemiol Biomarkers Prev 2022;31(1 Suppl):Abstract nr PO-020.