SARS-CoV-2 (COVID-19) has had a significant impact on cancer patients, particularly with delays in breast cancer survivors' care, according to a new survey. The results, published in Breast Cancer Research and Treatment, showed that almost half of breast cancer survivors have reported a delay in their care due to the pandemic (2020; https://doi.org/10.1007/s10549-020-05828-7). The researchers conducted the questionnaire via social media and email, and collected responses from 609 adult breast cancer survivors. Forty-four percent of participants reported that they had delays in their care.
"I began to see stories in the media about patients, specifically cancer patients, getting their surgeries cancelled or delayed," said Elizabeth Lerner Papautsky, PhD, Research Assistant Professor in the Department of Biomedical & Health Information Sciences at the University of Illinois at Chicago, and co-author of the study. "I saw similar conversations about treatment delays in patient communities on social media. I realized that patients with pre-existing conditions are experiencing an impact to their health care, and I wanted to capture it while it was still ongoing."
Although the results show that COVID-19 delayed care for such a high number of survivors, Papautsky noted it could have been worse.
"To be honest, I probably expected to see more given the universal shutdowns and cancellations of elective surgeries," she said. "Any delays have the potential to be consequential for patients-if not for clinical outcomes, then for mental health. Not to mention the workload associated with planning, replanning, and logistics on the patient and the health care side."
The results of the survey also showed one main demographic variable that had relevance: the younger population seeing more delays than that of the older population. In a press release on the study, Papautsky said they were surprised to find this variable and think it has to do with "cancellations of hormone therapy for ovarian suppression that is given to women with certain types of breast cancer," and that those women tend to be younger.
Although she expected a higher number, Papautsky still knows that delays in care do have a consequences on treatment and care for breast cancer survivors. When posed with the question as to how these delays will affect them specifically, she said that they would need more time to see how those consequences play out, though it could potentially range from impact on clinical outcomes to other factors such as quality of life, mental health, and pain.
"Literature focused on past disasters suggests that people with pre-existing conditions tend to experience lack of access to health care, treatment delays or interruptions, and medication shortages," she said. "Consequences can include exacerbations of illness or even death. I believe that there have been some recent studies looking at specific cancer treatments, such as radiation, and impact of delays."
Another important consideration of these results is how the delays are affecting hospitals and treatment centers, which rely on many of the services that are being postponed during the pandemic. Papautsky said that, of course, there is a financial impact, but there are other things to consider as well.
"There is the burden of decision-making associated with how to triage and prioritize patients based on urgency when resources are limited and/or reserved for COVID-19 patients like PPE, ERs, and personnel, as well as working through a backlog of patients during recovery from a surge," she explained.
According to epidemiological experts, COVID-19 is not going away any time soon. In fact, most say we have another 12-18 months before the world can finally start to let its guard down and get back to "normal" once there is an efficacious vaccine available. Given that fact, it's hard to see how these delays could improve until then. But Papautsky hopes that characterizing the delays and their impact can help inform systemic strategies for mitigating them for future surges, as well as streamline some processes and communications around planning, replanning, and scheduling.
"We do not know what other disruptions in health care the pandemic may bring in the future," she added. "Lessons learned from the initial surge can help mitigate future potential disruptions."
So, what can be done to actually improve the speed at which survivors can access care and treatment, even with the ongoing pandemic? Papautsky thinks that providers can take steps to deter these delays from happening in the future.
"I want to be conscious of not putting additional burden on providers or patients who already have so much on their plates," she said. "However, providers could reach out to patients who are experiencing delays to ease concerns, inform patients on the status of health care operations and safety precautions in place, and very importantly, to plan for next steps in how to address the delays. Providers should also be receptive to these conversations initiated by patients."
As for the survivors, Papautsky believes they have the power to speak up and demand that this issue is taken seriously. "Patients need to know that they can and should advocate for themselves in terms of seeking and sharing information."
Dillon Stickle is a contributing writer.