Advancing Education, Research, and Quality of Care for the Head and Neck oncology patient.
Introduction: Head and neck cancer profoundly affects patients physically and mentally. Survivorship is often accompanied by psychological challenges such as anxiety, depression, fear of recurrence, and social isolation. While healthcare providers recognize these struggles, limited time during clinic visits, often spaced far apart due to clinician demands, can leave mental health concerns unaddressed. As social media platforms become increasingly popular, patients are turning to these spaces for advice, support, and connection with others facing similar circumstances.
Reddit has become a valuable resource for head and neck cancer patients. Subreddits like r/HeadandNeckCancer (1,246 users) and r/HNSCC (383 users) offer communities where individuals can share experiences, seek advice, and provide mutual support. The platform’s anonymity encourages openness and vulnerability, allowing patients to share insights that may not surface during clinical interactions. This study aims to analyze mental health themes and discussions in these communities, offering insight into psychological struggles.
Methods: Posts and comments were systematically collected from the r/HeadandNeckCancer and r/HNSCC subreddits between December 2018 and October 2024 using Python and Reddit’s API. After pre-processing the text, Near Entity Recognition (NER) was conducted using a Bidirectional Encoder Representations from Transformers (BERT)-based NLP model, specifically SciBERT, alongside a custom medical term dictionary to identify and tag relevant medical terminology. A pre-trained model, DistilRoBERTa, fine-tuned for multi-class emotion classification, was applied to detect emotions such as Joy, Sadness, Fear, Anger, Disgust, Surprise, and Neutral. Detected emotions were aggregated at the user level to identify persistent emotional states, and contextual analysis grouped posts with related comments to capture discussions holistically.
Results: A total of 826 posts and 8,507 comments were analyzed, revealing a complex emotional landscape. The most prevalent emotions were Neutral (24.46%), Sadness (23.75%), and Joy (21.60%), indicating that both factual exchanges and emotional distress are common. Fear was frequently expressed (13.45%), reflecting patients’ anxieties. Emotions like Anger and Disgust appeared less frequently but were notably intense when present. Posts relating to treatment challenges, prognosis uncertainties, and quality of life post-surgery showed higher levels of Fear and Sadness, emphasizing the psychological burden on patients. Despite these challenges, the substantial presence of Joy highlights the supportive role of the community, with many users sharing encouraging messages and positive experiences.
User-level analysis showed consistently high levels of Sadness and Fear among certain individuals, indicating persistent emotional distress. Contextual analysis revealed that discussions often mirrored the tone of original posts, amplifying both negative and positive emotions. Temporal trends highlighted peaks in Sadness and Fear coinciding with treatment milestones or news events.
Conclusion: This analysis highlights significant mental health challenges within the head and neck cancer community on Reddit. Frequent expressions of Sadness and Fear point to ongoing anxieties about treatment outcomes and personal well-being, while the presence of Joy underscores the value of community support. These findings suggest that healthcare providers should prioritize mental health discussions during follow-up visits, focusing on alleviating fear and distress. Leveraging insights from social media could enable a more holistic approach to patient care, enhancing psychological well-being and quality of life.