The AYA Oncology Self-Care Movement (#AYAOSM): An Influencer-Driven Social Media Intervention for Oral Chemotherapy Adherence

PROJECT SUMMARY/ABSTRACT For adolescents and young adults (AYAs) with acute lymphoblastic leukemia, oral chemotherapy adherence is critical for maintaining cancer remission, but difficult to achieve. Prior research has shown that nearly 50% of AYAs had suboptimal oral chemotherapy adherence (defined as <95% adherent), increasing their relapse risk 2.5-fold. Despite potentially life-threatening nonadherence among AYAs, few oral chemotherapy adherence interventions have been tested in this population, with limited evidence of intervention effectiveness. This gap may be because researchers have largely tested generic interventions that were not tailored to or co-designed with AYAs and required the adoption of a new digital adherence tool that was not already part of AYAs’ daily technology use. In contrast, social media is ubiquitous, a place where AYAs already seek cancer-related support, and where “social media influencers” post appealing, first-hand content about cancer experiences, reaching thousands of followers. Our long-term goal is to improve adherence and reduce disparities in AYA cancer outcomes through scalable digital health strategies. The objective of this project, the AYA Oncology Self-care Movement (#AYAOSM) is to evaluate a tailored social media intervention for oral chemotherapy adherence in AYAs with acute lymphoblastic leukemia. Aligned with PAR-22-164, this will involve the “testing of rapid cancer communication intervention using innovative methods and designs” within an existing “information ecosystem” that has never been used for oral chemotherapy adherence—social media and the influencers therein. We build from our pilot data that has shown AYAs prefer a social media-enabled adherence intervention over other digital alternatives, and that influencer-based adherence messages are feasible to deliver and acceptable to AYAs. In Aim 1, using our bank of tailored and theory-informed social media messages for adherence, we will conduct a best-worst scaling exercise to identify priority message attributes. The results will be interpreted with researcher and influencer input to finalize the intervention. In Aim 2, via a prospective randomized controlled trial with 200 AYAs with leukemia, we will test the hypothesis that receiving the AYA-tailored social media messages will result in a greater proportion of AYAs reaching the adherence threshold for relapse prevention compared to a no message control group (electronic adherence monitoring and referral to a medication education website only). To support a future, national social media campaign, in Aim 3, we will study potential barriers and facilitators to implementing the social media adherence intervention with future adopters and implementers, including oncology clinicians and leaders from cancer agencies. Together, this project will expand the knowledge base on how to tailor adherence messages to a diverse and growing population of AYAs, determine the efficacy of a social media-enabled intervention for adherence, build sustainable partnerships with social media influencers, and understand barriers and facilitators to scaling this approach for a future social media campaign.