Advancing Education, Research, and Quality of Care for the Head and Neck oncology patient.
Importance: There is a well-established need to improve current Head and Neck Cancer (HNC) educational resources for patients. The existing literature has broadly underscored gaps in patient education, including the poor readability of current materials and the lack of educational content for caregivers.
Objective: Our study aims to investigate the range of questions and concerns among HNC patients and caregivers through analysis of a single social media forum designed for HNC patients and caregivers to pose questions.
Design: We present a cross-sectional study of an anonymous public database from a single social media forum (Reddit’s r/HeadandNeckCancer) designed for HNC patients and caregivers to pose questions. Posts written by HNC patients and caregivers from January to October 2024 were analyzed. Posts exclusively discussing chemotherapy and radiotherapy were excluded. Thematic analysis was conducted to identify topics that arose from each post.
Results: A total of 95 posts were included, with a median of 11 responses per post (interquartile range 5-18). 82 (86.3%) of posts were questions and 13 (13.7%) were updates. 66 (69.5%) of posts were written by patients, while the remaining posts (n=29, 30.5%,) were written by caregivers. Oral cavity (n=36, 37.9%) and oropharyngeal (n=23, 24.2%) cancer were the most reported sites of malignancy. 42 (44.2%) posts discussed a new diagnosis or newly diagnosed recurrence. The most common topics included ‘emotional support/coping mechanisms’ (n=19, 20%), ‘treatment options’ (n=16, 16.8%), ‘nutrition/swallowing’ (n=16, 16.8%), and ‘peri-operative expectations’(n=14, 14.7%). Both caregivers and patients most frequently sought ‘emotional support/coping mechanisms’ [n=6 (30%) and n=14 (18.6%) respectively]. However, patients more commonly wrote posts on ‘treatment complications/side effects’ (n=12, 16%), ‘treatment options’ (n=11, 14.7%) and ‘nutrition/swallowing’ (n=11, 14.7%). Whereas Caregivers focused on ‘peri-operative expectations’ (n=6, 30%) and ‘treatment options’ (n=5, 25%). Given that this forum is intended for HNC patients and caregivers, providers did not post nor respond to any discussions.
Examples of posts on ‘treatment complications/side effects’ included: “when [does] the face return back to normal shape/size?”, “any advice for trismus?”, and “a terrible smell started from my throat”. Those on ‘treatment options’ included “I’m really not understanding how I am meant to make a choice between these options”, “has anyone had successful long-term outcomes without radiation/chemo?”, “has anyone had the graft from the shoulder, if so why?”. Nutrition/swallowing discussions included concerns of adequate nutrition with a feeding tube, tolerating oral intake in the setting of pain, and strategies to optimize post-operative nutrition. Peri-operative expectations focused on what to expect during the inpatient stay and recommended ways that caregivers could make this time easier for their loved one.
Conclusion: Our study allows providers to better understand how to meet the educational needs of HNC patients and caregivers. Through reviewing an anonymous social media platform, we gain insight into organic conversations among this population and our analyses highlight under addressed questions/concerns among HNC patients and their caregivers. These topics can be used to develop more relevant and meaningful HNC educational material for this population.