DURHAM, N.C. – Cancer patients said the COVID-19 pandemic heightened infection concerns, increased feelings of fear, and disrupted their care, according to a research questionnaire.

The findings were an update of a previous analysis by researchers at Duke University and The University of Sydney detailing the impacts of living with cancer during the pandemic. It was published in Clinical Cancer Research, a journal of the American Association for Cancer Research, on March 15.

“The pandemic elicited a lot of uncertainty and dread and made people feel vulnerable,” said Mustafa Khasraw, M.D., professor in the Department of Neurosurgery at Duke University School of Medicine. “COVID-19 impacted access to social support programs and clinical trials, families’ participation in care, and personal contact with care providers.”

The analysis is based on interviews of over 90 patients and caregivers in the United States and Australia taken in 2020 and 2021 by researchers at Duke University and The University of Sydney. The questions and responses covered five key topics.

• Telehealth: Concerns about efficacy of clinical interactions were widespread. Respondents often said they preferred meeting with their doctors face-to-face versus online.
• Visitor Restrictions: Cancer patients felt overwhelmed when discussing difficult prognoses and treatment options without anyone to provide the necessary emotional support.
• Clinical Estrangement: Physical and logistical changes made at hospitals during the pandemic also caused estrangement between patients and clinicians. Masks made communication difficult, and the perception of inadequate safety measures increased patients’ sense of fear and lack of trust in the institution.
• Uncertainty in Accessing Clinical Care: Covid-19 research took priority so patients’ access to clinical trials and treatment were impacted. When vaccines emerged, there was confusion over distribution efforts and specific guidelines for those with various cancer treatment regimens.
• Diminished Social Attention to Cancer: Some patients felt that cancer became less of a priority for funders, doctors, researchers and the people around them – at a time when they felt additionally vulnerable.

The researchers determined that care providers could make some changes to enhance care even in the absence of a disruptive event like a pandemic. The changes include increasing access to social work professionals, investing in technology and training to ensure telehealth meets patient needs, and facilitating remote participation of a support person where they are prevented from attending in-person.

“We need to have strategies in place to not disrupt care during situations including pandemics, natural disasters, acts of terrorism, and even breakdowns in technology,” Khasraw said. “We rely so much on things that are not necessarily robust and need to find additional ways to cope and manage patient care. This will take complex planning between health care providers and the patient care community,” he said.

Additional authors of the study include Alex Broom, Leah Williams Veazey, Katherine Kenny, Imogen Harper, Michelle Peterie, Alexander Page, Nicole Cort, Jennifer Durling, Eric Lipp, Brent Hanks, Margaret Johnson, Amanda van Swearingen, Carey Anders, and David Ashley.

The research was funded in part by Australian Research Council (DP190100745) and the National Cancer Institute (P30CA014236).