In response to the COVID-19 public health crisis in 2020, PCORI launched an initiative to enhance existing research projects so that they could offer findings related to COVID-19. The initiative funded this study and others.
People with cancer face special challenges related to the COVID-19 pandemic. Delays in receiving potentially life-prolonging cancer treatments, fear of COVID-19, and social distancing policies related to the COVID-19 pandemic may negatively affect patients’ health and well-being.
To explore the impact of the COVID-19 pandemic on coping, telehealth use, and cancer treatment among patients with cancer, their caregivers, and clinicians to develop questions to help facilitate communication between patients and clinicians
|Mixed methods (surveys and interviews)
Survey: 181 patients who had surgery to treat upper gastrointestinal cancer and who were enrolled in an ongoing randomized controlled trial examining palliative care and 26 family caregivers, across four study sites
Interviews: 48 patients who had surgery to treat cancer, 4 family caregivers, and 19 cancer clinicians
Coping with COVID-19 pandemic, coping with cancer, telehealth use, pandemic-related treatment delays, and changes in cancer treatments
Development of a question set asking about changes to cancer care during the pandemic, concerns about cancer care during the pandemic, and preferences for telehealth and in-person visits
|Data Collection Timeframe
Survey: October 2020–August 2021
Interviews: August 2020–July 2021
This study explored how cancer treatment and coping among patients, family caregivers, and clinicians was affected by the COVID-19 pandemic. Patients and caregivers were enrolled in an ongoing clinical trial on palliative care.
Patients and caregivers completed surveys about cancer treatment and coping at enrollment and then one week, one month, three months, and six months post-surgery. Patients who had surgery more than six months prior and their caregivers were reenrolled in the study and completed surveys every three months. Researchers collected 424 surveys from 181 patients and 67 surveys from 26 caregivers. Among patients, 82% were White, 6% were Asian, 3% were Black, 1% were American Indian or Alaska Native, 2% were multiracial, and 7% were another race; 11% were Hispanic. Also, 55% were male. Patients received care at one of four hospitals located in four states.
Researchers also conducted interviews about coping and cancer treatment with 48 patients, six caregivers, and 19 clinicians.
Patients with cancer, family caregivers, clinicians, and representatives from professional and advocacy groups provided input throughout the study.
Across surveys and interviews, patients and caregivers reported coping well with cancer treatments during the pandemic. They also reported that the pandemic did not substantially change their cancer care. In contrast, clinician interviewees described widespread pandemic-related changes to cancer care. They also reported anxiety, fatigue, and moral distress about these changes.
In 61% of surveys, patients and caregivers reported having a telehealth visit for cancer care, with 69% of respondents reporting that they liked telehealth visits for cancer care. Among patients, 32% preferred telehealth, 26% preferred in-person visits, and 42% were neutral. Clinicians reported that telehealth visits were useful for healthy patients, but they preferred in-person visits for patients who were ill or frail.
Based on these results, the research team developed six questions to improve communication between patients, caregivers, and clinicians. The questions ask about pandemic-related care changes and concerns, coping, and preferences for telehealth.
Demographics varied by site; most patients and caregivers were White. Findings may not be generalizable to other locations or populations. Caregiver recruitment was lower than expected due to COVID-19 visitor restrictions, which may have affected study results.
Conclusions and Relevance
In this study, patients and caregivers felt supported during pandemic-related changes to their cancer care, whereas clinicians expressed feelings of anxiety, fatigue, and distress. Health systems can use the results to facilitate communication between patients with cancer, caregivers, and clinicians during the COVID-19 pandemic.