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.