Cancer never waits, but during the COVID-19 pandemic, its diagnosis and treatment had to. According to a survey commissioned by the Canadian Cancer Survivor Network (CCSN), many cancer diagnostic tests and treatments were cancelled or postponed because of COVID-19. These delays led to increased fear and anxiety among patients and caregivers, which continue today.
Overall, 54% of those surveyed have had their cancer care appointments cancelled, postponed, or rescheduled because of COVID-19. The same was reported by about 75% of prediagnosis and recently diagnosed patients. Because delays in cancer care can lead to progression of cancer, “It was disheartening to think we might face a public health crisis down the road when more patients might develop into late-stage cancer [because of delays to their treatment]”, says Jackie Manthorn (CCSN, Ottawa, ON, Canada).
Despite overall satisfaction with virtual visits, 71% of patients and caregivers in the survey remained concerned about receiving in-person care. They expressed concerns with their ability to receive hospital or emergency room care if needed, to get cancer-related tests, to see their doctor for follow-ups, to get help for new symptoms or side-effects from treatment, and to receive cancer treatment in a timely fashion. “Some patients were not having their scheduled tests before an appointment, not having their physical exam when it was needed, not having tests done to see if cancer cells were growing, and having a procedure done with no follow up afterwards”, says Manthorn. “Patients felt adrift, insecure.”
74% of those surveyed reported that delays in appointments and treatment had a major impact on their mental and emotional wellbeing. Many felt worried, concerned, anxious, or stressed by the delays. Recently diagnosed patients or those with metastatic disease reported the highest levels of anxiety, as did caregivers. “Sometimes caregivers can be more stressed because they are the ones navigating on behalf of the patient”, says Manthorn. “So if appointments are cancelled, it can be distressing. Caregivers were also worried about their loved one being alone in the hospital in case they were given bad news or needed more treatment, and could not understand the information.”
“The results of this survey were not surprising”, says Keith Stewart (Princess Margaret Cancer Centre, Toronto, ON, Canada). “When people are diagnosed with cancer, the clock is ticking and they want no delays. I was surprised though that caregivers were more concerned than patients, but it is worth reminding [that] there are people undergoing considerable emotional stress.”
“To save lives, cancer diagnosis and care must continue during any public health crisis”, says Manthorn. “We had to prepare for the worst, but in retrospect, we did not need to shut down cancer care and screening. Unless the system was completely overwhelmed, there is no reason why we could not continue with cancer care.”
Importance of home care
Addressing delays is crucial, but Manthorn also points out the importance of home care for some cancer patients after surgery, partially because many people feel more comfortable at home, especially during the pandemic, rather than at rehab or in a nursing home. The Ontario Government has been trying to privatise the provision of home health care, Which patient advocate groups such as CCSN are advising against.
Maintaining and improving cancer care
Interestingly, just before the COVID-19 pandemic, in addition to its changes to home care, the Ontario Government was in the process of consolidating the health-care system under one large superagency, which would eventually eliminate Cancer Care Ontario (CCO), the agency responsible for cancer services. However, when the COVID-19 pandemic hit, data management systems created by CCO were used by the province to help manage the pandemic.
“Our province has one of the best cancer systems in the world”, says Mary Gospodarowicz (retired, Princess Margaret Cancer Centre). “We all hope that the systems CCO developed will not be cancelled or changed. A lot of good was done.”
Many factors affect good cancer care, but it is important that diagnosis and treatment delays are avoided during times of stress, such as pandemics; that quality home care is invested in; and that leading cancer care and research organisations are maintained.
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