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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.

What was this COVID-19 study about?

During the COVID-19 pandemic, health systems had to change how they provide care. One change was more use of telehealth. Telehealth provides care to patients remotely using phone or video. Another change was to delay treatment for minor health problems. These changes may affect patients’ health and well-being, especially for patients with illnesses like cancer.

In this study, the research team wanted to learn how COVID-19 affected cancer care and coping during the pandemic for patients, caregivers, and clinicians, like doctors and nurses. To find out, the team used surveys and interviews as part of a cancer care study. Their goal was to come up with questions to help patients, caregivers, and clinicians talk about patient care.

What were the results?

In surveys and interviews, patients and caregivers said they were coping well with cancer care during the pandemic. Most said that the pandemic didn’t change patients’ cancer care. But in interviews, clinicians said that the pandemic led to widespread changes in cancer care. They also reported feeling anxiety, fatigue, and distress about these changes.

In 61 percent of surveys, patients and caregivers said they had a telehealth visit for cancer care and liked it. Among patients, 32 percent preferred telehealth, 26 percent preferred in-person care, and 42 percent were neutral. Clinicians said 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 created six questions to use during cancer care visits. These questions can help patients, caregivers, and clinicians talk about coping, changes to cancer care due to the pandemic, and telehealth preferences.

What did the research team do?

The research team sent surveys to patients and caregivers five times during the study. The team collected 424 surveys from 181 patients and 67 surveys from 26 caregivers. All patients had surgery to treat cancer of the pancreas, stomach, esophagus, liver, or gallbladder. Of these, 82 percent were White, 6 percent were Asian, and 3 percent were Black. Also, 1 percent were American Indian or Alaska Native, 2 percent were more than one race, and 7 percent were another race; 11 percent were Hispanic. In addition, 55 percent were men. All received care at one of four hospitals in four states.

The research team also interviewed 48 patients, six caregivers, and 19 clinicians.

Patients with cancer, caregivers, clinicians, and professional and advocacy group members provided input during the study.

What were the limits of the study?

Most patients and caregivers were White. Results may differ for people of other racial backgrounds. Because hospitals limited visits due to COVID-19, fewer caregivers than planned joined the study. Results may have differed if more caregivers were in the study.

How can people use the results?

Health systems can use the results to help patients with cancer, caregivers, and clinicians communicate about cancer care during the pandemic.

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.

Background

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.

Objective

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

Study Design

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.

Results

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.

Limitations

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.

Peer review of PCORI-funded research helps make sure the report presents complete, balanced, and useful information about the research. It also assesses how the project addressed PCORI’s Methodology Standards. During peer review, experts read a draft report of the research and provide comments about the report. These experts may include a scientist focused on the research topic, a specialist in research methods, a patient or caregiver, and a healthcare professional. These reviewers cannot have conflicts of interest with the study.

The peer reviewers point out where the draft report may need revision. For example, they may suggest ways to improve descriptions of the conduct of the study or to clarify the connection between results and conclusions. Sometimes, awardees revise their draft reports twice or more to address all of the reviewers’ comments.

Peer reviewers commented and the researchers made changes or provided responses. Those comments and responses included the following:

• The reviewers asked the researchers to provide a conceptual framework for their qualitative interviews. The researchers explained that while they agree about the importance of using conceptual models, their early work in this area did not identify an appropriate model to use. Therefore, they felt it would be more appropriate to go into the interviews with a more open and exploratory mindset focused on key themes that would help them work towards establishing an appropriate conceptual framework in the future.
• The reviewers questioned whether the study represented shared decision making as referenced in the report because the reviewers did not see the development of an assessment tool to allow patients to voice their feelings regarding telehealth delivery and in-person care during the COVID pandemic as a shared decision making intervention. The researchers agreed, explaining that they initially believed that patients and caregivers would want to participate in shared decision making with their clinicians regarding their cancer treatments. As data were collected the researchers discovered that in fact patients and their caregivers were more comfortable with their medical teams making decisions about their treatments, so the researchers decided to focus on creating a communication tool rather than a shared decision making tool. The researchers revised the report to describe these events more clearly and explain why they changed their original study goals.
• The reviewers requested a clearer explanation of how the researchers used their survey and qualitative interview results to develop their communication tool. The reviewers also asked about the results from survey and interview questions that were not described in the report. The researchers added these additional results to the report and added flow charts to the report to demonstrate how the survey and interview data contributed to the development of the communication tool.
• The reviewers expressed concern about the communication tool adding time to physician visits and asked whether the tool was currently in use anywhere. The researchers said that the tool has not been implemented because they are still collecting stakeholder data. The researchers noted that their study stakeholders were also concerned about the tool adding time to the doctor’s visit, so the researchers added this question to the report’s discussion of future research directions.
• One reviewer asked about modifying this communication tool so it could be used more broadly outside of the COVID-19 environment. The researchers explained that they were focused specifically on developing a tool to use during the pandemic but agreed that the tool could be relevant for understanding general patient preferences regarding their care. They added this idea to their future research directions as well.

View this COVID-19 study's final enhancement report.

DOI - Digital Object Identifier: 10.25302/03.2023.IHS.160936518-C19