Head and Neck Cancer Online Support Groups: Disparities in Participation and Impact on Patients

Abstract

Abstract Objective To characterize the users of the head and neck cancer (HNC) online support group (OSG) and describe the perceived benefits of membership. Study Design Cross‐sectional. Setting Online. Methods An administered survey with questions asking about demographics, cancer history, treatment choices, and feelings about OSGs was posted on the 5 largest HNC OSGs on Facebook. Results A total of 97 participants completed the survey. Mean age was 57.8 years old (standard deviation = 10.7 years). Most participants were female (50.5%) and Caucasian (92.8%). This cohort was well educated with 65.5% holding at least a college degree. Annual income was high with 41.8% reporting annual income of $100,000 or greater. The most common treatment modality was radiation (88.7%). The most common surgery was neck dissection (46.4%). Most participants preferred OSGs (70.8%) over other support group types. OSGs were heavily utilized with our cohort reporting using the OSG at least several times a week (80.0%). The top reasons for joining the OSG were sharing one's experience of HNC (76.3%) and gaining support from others with HNC (85.6%). OSGs were ranked as the #3 source of medical information for HNC behind otolaryngologists and oncologists. Membership in a HNC OSG had a minimal impact on decision‐making. Conclusion HNC OSGs appear to provide a beneficial community for HNC patients. Otolaryngologists should consider incorporating HNC OSG as a possible supplemental resource for their HNC patients.

Keywords

• head and neck cancer
• online support community
• support group