Introduction
The global COVID-19 pandemic has had a significant impact on all aspects of society, with a large burden falling on members of the healthcare community. With hospitals focusing on those ill from COVID-19, cancer patients have the potential for delay or reduction in care as clinical resources have been compromised. Few populations have felt the effects of these changes more than those being evaluated or treated for head and neck cancer (HNC) as the multidisciplinary requirements for this population includes dental, medical, otolaryngology-head and neck surgery, and radiation and medical oncology, among others. The mucosal nature of many of these cancers results in significant concerns about aerosolization of viral particles and the potential for delays in care.  In an effort to minimize infection transmission and conserve the limited supply of personal protective equipment (PPE), health systems have instituted policies that encourage social distancing such as postponement of elective surgeries and outpatient clinic visits, elimination of hospital visitors, and rapid adoption of alternative means of care such as telemedicine and drive-thru testing.
Multiple societies and organizations involved in head and neck cancer care across different specialties, including otolaryngology-head and neck surgery, radiation oncology, dentistry, speech/swallowing pathology, and medical oncology, have promptly issued management algorithms to guide clinical care during this pandemic11Givi B, Schiff BA, Chinn SB, et al. Safety Recommendations for Evaluation and Surgery of the Head and Neck During the COVID-19 Pandemic. JAMA Otolaryngol Head Neck Surg . 2020 Mar.,22Bartlett DL, Howe JR, Chang G, et al. Management of Cancer Surgery Cases During the COVID-19 Pandemic: Considerations. Ann Surg Oncol. 2020 Apr; doi: 10.1245.,33Marron JM, Joffe S, Jagsi R, Spence RA, Hlubocky FJ. Ethics and Resource Scarcity: ASCO Recommendations for the Oncology Community During the COVID-19 Pandemic. J Clin Oncol. Apr 2020; doi. 10.1200/JCO.20.00960.. The shift of focus away from non-urgent conditions has been instrumental in creating a united effort to combat infection. However, there is little precedent for navigating oncologic care during such times. These abrupt changes in management may leave cancer patients undergoing active treatment frightened, uneasy, and isolated. Given the higher rates of emotional distress, cancer and treatment impact on daily living, and mucosal exposures seen in head and neck cancer patients, these individuals appear to be particularly vulnerable to the fear and anxiety produced by the on-going public health emergency44Wu Z, McGoogan JM. Characteristics of and Important Lessons From the Coronavirus Disease 2019 (COVID-19) Outbreak in China: Summary of a Report of 72 314 Cases From the Chinese Center for Disease Control and Prevention. JAMA. 2020;323(13):1239-1242..
Even in normal circumstances, let alone in this current climate, HNC patients often are in need of guidance to alleviate their concerns and many advocacy organizations have been proactive in providing support through various platforms such as news articles, webinars, and financial assistance. In addition to meeting patients’ needs, advocacy groups also play roles in providing patient education and raising public awareness, moderating call lines and chat forums, sustaining research through public or private funding, and representing the HNC community on legislative boards.   This timely and important special communication provides an outline of the issues being faced by HNC patients and caregivers during the COVID-19 pandemic and some of the programs that have been developed by advocacy organizations to address them. This unprecedented collaboration among a variety of organizations and advocacy groups also provides critical information on how the current crisis has impacted the utilization of these groups and the unique challenges being faced as they work to offer needed services to their communities.
To capture up-to-date, relevant information on the impact of COVID-19 on head and neck advocacy organizations, representatives of six prominent North American head and neck cancer advocacy groups were contacted to ask for participation by providing their respective groups’ experience during COVID-19. Semi-structured interviews were then conducted via phone and email communications with all responding organizations to identify: changes in volume of people in contact with their organization (including website traffic, social media engagement, support phone line volume and email communications), changes in observed patient concerns, changes in HNC advocacy group programs, and challenges faced by advocacy organizations during the COVID pandemic. Five out of six invited organizations participated in interviews. Information obtained from these communications is qualitatively summarized in the discussion below.