Head and Neck Cancer and Social Media: The Patient Experience and Cancer Survivorship

Objectives/Hypothesis To characterize the head and neck cancer patients' lived experiences with survivorship through Instagram and examine opportunities for health professionals to provide support and outreach specifically targeting these needs. Study Design Descriptive observational study. Methods We analyzed key head and neck cancer–related hashtags by querying medical and layman terminology. The top English‐language posts for #headandneckcancer underwent further content examination using thematic analysis based in grounded theory for categorization for user engagement (determined by “likes” and comments), type of content, and category of the account that created the post. Of the survivorship posts by patients, the content of posts in top user accounts was further analyzed. Results There were 11,600 Instagram posts on #headandneckcancer, 1,300 posts on #headandneckcancerawareness, 1,100 posts on #headandneckcancersurvivor, and several thousand posts for additional layman terms. The majority of posts were from patients (65%), with few from head and neck surgeons or medical organizations (26%). User engagement was primarily by nonmedical accounts (95%). Posts by patients discussed medical appointments and treatments (81%), managing treatment effects and symptoms (66%), and cancer screening and prevention (23%). Specific concerns included fatigue (53%), postsurgical cosmetic appearance (27%), and weight and nutrition (34%). Conclusions Our study suggests that Instagram accounts can be intimate records of the patient experience, and gaining a better understanding of the daily experience of survivorship may be critical for head and neck surgeons and other oncology providers to provide truly comprehensive cancer care. Level of Evidence 4 Laryngoscope , 131:E1214–E1219, 2021