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.