Scanxiety Conversations on Twitter: Observational Study (Preprint)

Abstract

Scan-associated anxiety (or “scanxiety”) is commonly experienced by people having cancer-related scans. Social media platforms such as Twitter provide a novel source of data for observational research.

We aimed to identify posts on Twitter (or “tweets”) related to scanxiety, describe the volume and content of these tweets, and describe the demographics of users posting about scanxiety.

We manually searched for “scanxiety” and associated keywords in cancer-related, publicly available, English-language tweets posted between January 2018 and December 2020. We defined “conversations” as a primary tweet (the first tweet about scanxiety) and subsequent tweets (interactions stemming from the primary tweet). User demographics and the volume of primary tweets were assessed. Conversations underwent inductive thematic and content analysis.

A total of 2031 unique Twitter users initiated a conversation about scanxiety from cancer-related scans. Most were patients (n=1306, 64%), female (n=1343, 66%), from North America (n=1130, 56%), and had breast cancer (449/1306, 34%). There were 3623 Twitter conversations, with a mean of 101 per month (range 40-180). Five themes were identified. The first theme was experiences of scanxiety, identified in 60% (2184/3623) of primary tweets, which captured the personal account of scanxiety by patients or their support person. Scanxiety was often described with negative adjectives or similes, despite being experienced differently by users. Scanxiety had psychological, physical, and functional impacts. Contributing factors to scanxiety included the presence and duration of uncertainty, which was exacerbated during the COVID-19 pandemic. The second theme (643/3623, 18%) was the acknowledgment of scanxiety, where users summarized or labeled an experience as scanxiety without providing emotive clarification, and advocacy of scanxiety, where users raised awareness of scanxiety without describing personal experiences. The third theme was messages of support (427/3623, 12%), where users expressed well wishes and encouraged positivity for people experiencing scanxiety. The fourth theme was strategies to reduce scanxiety (319/3623, 9%), which included general and specific strategies for patients and strategies that required improvements in clinical practice by clinicians or health care systems. The final theme was research about scanxiety (50/3623, 1%), which included tweets about the epidemiology, impact, and contributing factors of scanxiety as well as novel strategies to reduce scanxiety.

Scanxiety was often a negative experience described by patients having cancer-related scans. Social media platforms like Twitter enable individuals to share their experiences and offer support while providing researchers with unique data to improve their understanding of a problem. Acknowledging scanxiety as a term and increasing awareness of scanxiety is an important first step in reducing scanxiety. Research is needed to guide evidence-based approaches to reduce scanxiety, though some low-cost, low-resource practical strategies identified in this study could be rapidly introduced into clinical care.