Patient Concerns 
Head and neck cancer patients have many concerns surrounding the impact of COVID-19.  These individuals may experience more psychosocial morbidity than non-HNC patients due to perceived disfigurement and the inability to speak and eat properly11Howren MB, Christensen AJ, Karnell LH, Funk GF. Psychological factors associated with head and neck cancer treatment and survivorship: evidence and opportunities for behavioral medicine. J Consult Clin Psychol. 2013;81(2):299-317.. This may leave these patients even more vulnerable to the uncertain nature of changing treatment paradigms and mandates of social isolation. Additionally, given the immunosuppression resulting from treatment as well as HNC-specific sequelae such as having a tracheostomy or a laryngectomy stoma, HNC patients are an at-risk population for COVID-19 infection. As such, worries that are natural to arise from the COVID-19 pandemic may be heightened in this group. These anxieties may manifest as concerns regarding both the acute risk of COVID-19 infection as well as its impact on their cancer treatment. The current environment may make many patients wary of any healthcare environment for fear of infection. This, coupled with the inability to proceed with care alongside family members, has even led some patients to avoid treatment altogether of their cancer22Sharma, A. The Surge after the Surge: Anticipating the Increased Volume and Needs of Head and Neck Cancer Patients after the Peak in COVID-19. Authorea. April 29, 2020. DOI: 10.22541/au.158817694.45399774.
Additional concerns of HNC patients revolve around accessibility and/or delay of treatment. Uncertainty regarding medical, personal and social issues are already prevalent in a cancer patient’s life and the current climate exacerbates these concerns. Management for HNC now requires reassessment of risk and benefits of treatment during the COVID-19 era, and alterations from standard practice, such as foregoing adjuvant chemotherapy, may occur. A point of concern therefore is how changes in overall management may affect patient outcomes.  This sentiment was recently reflected in a statement by a HNC patient on the Head and Neck Cancer Alliance’s (HNCA) Inspire patient forum, and is echoed by many others:
“My fear is that we, cancer patients, will not get the best treatments, if any. If all doctors and nurses are mobilized to help infected people who will treat us?”
This patient concern is not unfounded. A recent survey of more than 1,200 cancer patients and survivors by the American Cancer Society Cancer Action Network (ACSCAN), found that 27% of patients in active treatment experienced delays secondary to COVID-19 precautions, and 13% of those did not receive any information on rescheduling of treatment33American Cancer Society Cancer Action Network. COVID-19 Pandemic Impact on Cancer Patients and Survivors. https://www.fightcancer.org/sites/default/files/National%20Documents/Survivor%20Views.COVID19%20Polling%20Memo.Final_.pdf. Published 2020. Accessed April 29, 2020.. In this same assessment, over 40% of active treatment patients felt that the response to COVID-19 would decrease access to care.  Prioritization of HNC treatment, although necessary to triage most high-risk cases, may leave certain groups unattended. Ambassadors to the HNCA, who lead group-discussions with HNC survivors, have noticed that many patients are worried they aren’t being considered a priority anymore. This may include those receiving symptomatic or palliative care, or those with low-risk pathologies such as low-grade salivary cancers or differentiated thyroid cancers44Spicer J, Chamberlain C, Papa S. Provision of cancer care during the COVID-19 pandemic. Nature Reviews Clinical Oncology. 2020..  Especially in the survivorship period, HNC patients may be at higher-risk for compromised physical and psychosocial well-being55Sterba KR, Zapka J, Armeson KE, et al. Physical and emotional well-being and support in newly diagnosed head and neck cancer patient-caregiver dyads. J Psychosoc Oncol.2017;35(6):646-665. and may suffer disproportionately from discontinuation of maintenance oncologic care.
Many support groups also have had to cancel meetings due to the shelter-in-place requirements. This leaves many patients with limited contact with those having similar post-treatment issues. These support groups, especially for laryngectomees, provide important information on how to cope with a new “normal.” These individuals often feel isolated due to limited vocalization options making personal interactions difficult. As a result, alternative portals, like video-conferences, have been instrumental as they offer a chance to have some safe social communications.
In addition to concerns regarding treatment and the associated recovery, those in the post-treatment or survivorship phase may worry about the fear of recurrence, as in-person follow-up visits usually entailing scoping procedures or surveillance imaging may be indefinitely postponed. Head and neck surgeons may suggest visits be held by way of telemedicine and may order surveillance imaging if in-person examinations cannot be completed. However, these virtual visits lack a detailed physical exam, and patients scheduled for imaging may find these services inaccessible. In fact, the recent ACSCAN survey reported 20% of patients whose care has been impacted by COVID-19 were unable to undergo imaging in the post-treatment contextvii.
Another patient concern may be the added logistical challenges that now accompany their care. HNC patients have a higher financial burden compared to other cancers and often are of lower income and educational levels, with poorer baseline health status66Massa ST, Osazuwa-Peters N, Adjei Boakye E, Walker RJ, Ward GM. Comparison of the Financial Burden of Survivors of Head and Neck Cancer With Other Cancer Survivors. JAMA Otolaryngol Head Neck Surg . 2019 Mar;145(3):239-249.. This has been observed by advocacy groups, as the majority of phone calls to the HNCA have been regarding financial ability to afford treatment itself and transportation to medical facilities. Baddour et al hypothesized that over 60% of HNC survivors may be impacted by COVID-19’s strain on the economy, especially as it has forced many into temporary unemployment77Baddour K, Kudrick LD, Neopaney A, et al. Potential impact of the COVID-19 pandemic on financial toxicity in cancer survivors. Head Neck. 2020 Apr; doi: 10.1002/hed.26187. [Epub ahead of print]. Similarly, the aforementioned ACSCAN survey also revealed that 38% of respondents felt significant financial strain during this COVID-19 era, with 50% of patients with annual income <$30,000 expressing concern regarding how to afford treatmentvii. Moreover, although Medicare covers most items for laryngectomees, they do not always provide reasonable reimbursement to hospitals and clinics for materials such as in-dwelling speech prostheses. Those impacted patients therefore have to pay out of pocket for covered items that some facilities refuse to provide. It is clear that economic hardships not only affect access to treatment, but also can significantly impact mental health and decrease overall quality of life.
The Head and Neck Cancer Living Foundation (HNCLF) provides financial assistance to low-income HNC patients for treatment and recovery expenses. Since COVID-19, this patient population has experienced even greater barriers to care as social services and discount providers are less available than ever before. For example, HNC patients often require immediate oral healthcare before and after treatment. Low-income patients often depend on local dental partners that offer discounts or even local dental schools for assistance. Many of these clinics, dental schools and local dental providers have closed or significantly reduced their services in response to COVID-19, leaving these patients with fewer options for care and greater need for support.
Lastly, the primary advocate of HNC patients, besides themselves, may be their family members or friends, serving as caregivers. Unfortunately, social distancing precautions have limited outside visitors to treatment facilities at which patients may receive care. Many HNC patients undergoing treatment or requiring work-up will have to do so by themselves. Often, these individuals also require transportation support to and from appointments. Social distancing guidelines have impacted the availability of volunteers willing to provide transportation support, therefore affecting the ability of the patient to access the care they need. Patients are now challenged with finding safe transportation and navigating their care alone. This isolating effect may make coping with cancer during the COVID-19 era all the more difficult.  The exact impact this has may differ on an individual level and can also depend on what phase of their cancer journey patients are in, and future investigation is needed to best characterize concerns and develop patient-centered strategies to alleviate them.