Published on March 10, 2021
Treatment Delays, Infection and Finances Top List of COVID-19 Concerns
A new study reports that cancer survivors, a term used from the point of diagnosis forward, worry about numerous care issues, including in-person visits, rationed care, recurrence and untreated symptoms, due to the COVID-19 pandemic.
The paper, appearing in the Journal of Psychosocial Oncology last month, used a mixed-methods approach (patients were asked open [qualitative] and closed-ended [quantitative] questions) to explore which survivors were most worried about cancer care, COVID-19 infections and finances. In addition, the paper includes survivors’ own words to describe their experiences and concerns about the impact on their overall health.
While cancer patients are at higher risk for serious COVID-19 outcomes, “the pandemic has also put cancer survivors at higher risk for negative impacts on quality of life, including elevated rates of cancer worry, health anxiety, and depression, and potentially also to financial toxicity and strain,” the study authors wrote.
The paper was based on the American Cancer Society Cancer Action Network’s (ACS CAN) Survivor Views Panel Study. Of the 3,055 active panelists, approximately one-third responded to the online survey, which was conducted from March 25 to April 8, 2020. Half of the participants were within one year of receiving treatment and most had breast cancer.
Among the Findings:
- Patients discussed many types of treatment delays, including disruptions in cancer care, specialty care, complementary alternative medicine (i.e., physical therapy, acupuncture, massage therapy) and primary care. Many of the healthcare disruptions involved follow-up care, such as bloodwork, scans and laboratory testing.
- 77% of patients worried that they were at high risk for serious health impacts and were concerned about intensive care unit admission or death if infected with COVID-19.
- Many survivors worried about contracting the novel coronavirus by going to their treatments. In fact, some reported canceling their appointments out of fear. Those who still went to treatments had to go alone because of new restrictions, which compounded their distress. There was no one to rely on to ask questions and no in-person support when receiving bad news.
- Survivors expressed anxiety about recurrence, the spread of their cancer if treatments were delayed, ongoing symptoms and potential complications (e.g., port infection). While fear of recurrence is commonly reported among survivors, “the uncertainty of when care would return to normal due to the pandemic seemed to exacerbate anxiety levels about cancer growth and spread in the interim,” the authors wrote. “Survivors who were in active treatment or were experiencing cancer or treatment-related symptoms or issues were anxious about delays in appointments to resolve issues or continue their treatment plan.”
- 27% of respondents worried about the financial impact of the pandemic making it hard to afford care. Some who reported losing wages due to decreased hours, furlough or job loss sometimes chose not to go to medical appointments or refill medications.
- A small number of survivors described a great deal of anxiety over the possibility of the U.S. triaging COVID patients based on underlying health conditions, such that cancer survivors would not be eligible for COVID treatment if infected. Some discussed a fear of healthcare systems dismissing high-risk populations, such as themselves, as “expendable,” “first to be sacrificed,” “blacklisted” and as having “no worth.”
“The delays and cancelations noted by cancer survivors in the survey highlight the need for policy interventions and new delivery models that make it safe for cancer patients to receive care,” the authors wrote. “…Public policies that address the financial worries associated with the pandemic are critical, including policies that keep costs predictable – like capping total out-of-pocket spending in Medicare, prohibiting surprise billing and ensuring that all insurance covers COVID testing without copays.”
Bottom line: If you are feeling anxious and stressed about the impact of the pandemic on your care, you are not alone. Be sure to discuss the safety of cancer treatment with your healthcare team. Ask about treatment options, whether treatment is needed right away and the level of virus activity in your area. An oncology social worker can help you access community resources, including financial assistance and provide emotional support.
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