The emotional side of taking part in a cancer clinical trial

Abstract

Background Taking part in a cancer clinical trial often represents a source of psychological distress and emotional activation among patients and their caregivers. Nowadays, social media platforms provide a space for these groups to freely express and share their emotional experiences. Aims We aimed to reveal the most prevalent basic and complex emotions and sentiments in the posts of the patients and caregivers contemplating clinical trials on Reddit. Additionally, we aimed to categorize the types of users and posts. Methods With the use of keywords referring to clinical trials, we searched for public posts on the subreddit ‘cancer’. R studio v. 4.1.2 (2021-11-01) and NRC Emotion Lexicon was used for analysis. Following the theoretical framework of Plutchik’s wheel of emotions, the analysis included: 8 basic emotions (anger, fear, anticipation, trust, surprise, sadness, joy, and disgust) and 4 types of complex emotions (primary, secondary, tertiary, and opposite dyads). We utilized the package ‘PyPlutchik’ to visualize the emotion wheels in Python 3.10.5. Results A total of 241 posts were included in the final database. User types (129 patients, 112 caregivers) and post types (142 expressed shared experience, 77 expressed advice, and 85 conveyed both) were identified. Both positive (N = 2557, M = .68) and negative (N = 2154, M = .57) sentiments were high. The most prevalent basic emotions were: fear (N = 1702, M = .45), sadness (N = 1494, M = .40), trust (N = 1470, M = .44), and anticipation (N = 1376, M = .37). The prevalence of complex/dyadic emotions and their interpretation is further discussed. Conclusion In this contribution, we identified and discussed prevalent emotions such as fear, sadness, optimism, hope, despair, and outrage that mirror the psychological state of users and affect the medical choices they make. The insights gained in our study contribute to the understanding of the barriers and reinforcers to participation in trials and can improve the ability of healthcare professionals to assist patients when confronted with this choice.