eAppendix. Oncology Language for the COVID-19 Pandemic
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Gharzai LA, Resnicow K, An LC, Jagsi R. Perspectives on Oncology-Specific Language During the Coronavirus Disease 2019 Pandemic: A Qualitative Study. JAMA Oncol. 2020;6(9):1424–1428. doi:10.1001/jamaoncol.2020.2980
How can oncologists communicate with patients in challenging situations during the coronavirus disease 2019 pandemic?
In this qualitative study of 8 physicians and 48 patients with cancer, the physicians identified 8 oncology-specific scenarios in which communication with patients had been challenging, and the patients provided their reactions to each scenario. These physician and patient insights, along with principles identified through literature review by health communication experts, were synthesized for application to the clinical scenarios.
This study suggests that communication needs in cancer care can be identified to inform the development of a practical, evidence-based communication guide that fulfills the need of patients and oncologists.
The novel coronavirus disease 2019 (COVID-19) pandemic has dramatically changed the US health care system, causing an influx of patients who require resources. Many oncologists are having challenging conversations with their patients about how the COVID-19 pandemic is affecting cancer care and may desire evidence-based communication guidance.
To identify the clinical scenarios that pose communication challenges, understand patient reactions to these scenarios, and develop a communication guide with sample responses.
Design, Setting, and Participants
This qualitative study that was conducted at a single Midwestern academic medical center invited physicians to respond to a brief semistructured interview by email or telephone and then disseminated an anonymous online survey among patients with cancer. Oncology-specific, COVID-19–related clinical scenarios were identified by the physicians, and potential reactions to these scenarios were gleaned from the patient responses to the survey. Health communication experts were invited to participate in the iterative development of a communication guide, comprising 3 essential communication principles and strategies and informed by insights from physicians and patients. This study was conducted from March 25, 2020, to April 2, 2020.
Expert review, interviews, and surveys assessing challenging situations specific to cancer management during the COVID-19 pandemic.
Main Outcomes and Measures
Oncology-specific, COVID-19–related clinical scenarios from physician interviews; responses to each scenario from patient surveys; and applicable communication principles from health communication expert literature review.
Of the 8 physicians who participated in interviews, 4 were men (50%) and 4 were women (50%). These physicians represented the following disciplines: internal medicine (n = 1), hematology/oncology (n = 2), radiation oncology (n = 3), and surgical oncology (n = 2). Their disease site specialization included cancers of the breast, head and neck, melanoma, and gastrointestinal and genitourinary tracts. A total of 48 patients with cancer completed the online survey; no demographic information was collected from the patients. The physicians identified 8 oncology-specific, COVID-19–related scenarios in which communication might be challenging: (1) worse outcomes from COVID-19, (2) delay in cancer screening, (3) delay in diagnostic workup, (4) delay in initiation of treatment, (5) offer of nonstandard treatment, (6) treatment breaks, (7) delay in follow-up imaging or care, and (8) inability to be admitted into the hospital for management. Potential patient reactions to each of these scenarios were compiled from survey responses. For most scenarios, patient reactions involved anger, fear, and anxiety (eg, “I’m scared”; “This isn’t fair. I am upset.”). These emotional patient responses informed the selection of the 3 general communication principles, which suggested language and strategies that physicians can use to respond to patients.
Conclusions and Relevance
In this qualitative study, physicians and patients identified communication needs used by health communication experts to inform the development of a practical, evidence-based communication guide for oncology care during the COVID-19 pandemic.
The coronavirus disease 2019 (COVID-19) pandemic has created unprecedented health care changes in the US, causing an influx of patients who need resources and forcing physicians to make difficult choices about patients with other, nonpandemic health needs. Patients with cancer may have worse outcomes from COVID-19 infection,1 yet they still need to engage with the health care system to receive cancer treatment. In this new environment, oncologists must depart from the usual routines to keep patients with cancer safe while conserving resources. For many oncologists, providing such care has necessitated changing the standards of care. The ethical imperative to shift from traditional patient-centered decision-making toward a public health focus2 can be especially difficult to convey.3 Communicating these uncharted decisions, which can instill anxiety and even anger in patients, may be challenging.
Inspired by the COVID-19 guide published by VitalTalk,4 we, along with a multidisciplinary group of health communication experts, developed a communication guide for oncologists. Our objectives were to (1) identify the clinical scenarios that posed communication challenges, (2) understand patient reactions to these scenarios, and (3) develop a communication guide with sample responses.
This qualitative study was determined to be exempt by the institutional review board of the University of Michigan, which waived the documentation of written informed consent. Participants’ voluntary submission of a response after being informed of the purpose was considered sufficient, and requiring written informed consent could compromise the confidentiality and safety of participants. We followed the Standards for Reporting Qualitative Research (SRQR) reporting guideline,5 although data collection, analysis, and processing were performed urgently given the necessity of providing timely guidance to frontline clinicians. This study was conducted from March 25, 2020, to April 2, 2020.
To identify communication challenges, we invited 10 physicians practicing at a single Midwestern academic medical center to respond to a brief, semistructured questionnaire. These physicians were purposely selected for being diverse in age, sex, rank, specialty, and cancer site specialization. Each received an email invitation and was asked to respond either by email or telephone. They were prompted to share their perspectives on communication needs during the COVID-19 pandemic. We conducted a thematic analysis of these open-ended responses, and the sample size was determined by thematic saturation.6 Eight of the 10 physicians emailed detailed replies, and the other 2 offered to participate after a short delay. Given that saturation was achieved, the 2 physicians were not interviewed.
After the identification of COVID-19–related clinical scenarios, an anonymous online survey was disseminated by the Patient Family Support Services at Michigan Medicine (Donna Murphy, LMSW, University of Michigan, sent March 30, 2020) to an internal LISTSERV of patients with cancer who had previously agreed to complete surveys. The survey was developed using standard methods,7 including review by survey experts, and described the scenarios identified by physicians. Patients were asked to respond (in free text) with questions or reactions.
Health communication experts (2 leaders and 12 collaborators) were invited to participate in the development of the communication guide. Two of us served as leaders (K.R., L.C.A), and we and 6 of the collaborators are members of the Center for Health Communications Research at the University of Michigan with expertise that includes decision-making, behavioral science, and survey design. One of us (K.R.) invited the other 6 collaborators, all of whom have advanced knowledge of self-determination theory, motivational interviewing, or patient-centered communication. This team of experts developed 3 core communication principles (recognize and normalize emotions; use the 4Cs: context, consideration, caring, and commitment; and use the Ask-Tell-Ask approach) to apply to the physician-identified clinical scenarios by synthesizing several evidence sources (Table 1). First, the team of experts examined general communication guidelines developed for health care practitioners.8,9 Second, they synthesized the principles of self-determination theory10,11 and strategies from motivational interviewing12 to identify relevant principles, including reflecting back patient emotion and the Ask-Tell-Ask approach.13
Examples of language that oncologists could use to respond to patient reactions were developed by a physician (L.A.G.) and then iteratively refined by the health communication experts to incorporate the core principles described. The guide was reviewed by the physicians who had served as the initial participants to enhance the trustworthiness of the identified communication challenges and the relevance of the suggested language.
Of the 8 physicians interviewed, 4 were men (50%) and 4 were women (50%) whose seniority ranged from resident to department chair. These physicians represented the following disciplines: internal medicine (n = 1), hematology/oncology (n = 2), radiation oncology (n = 3), and surgical oncology (n = 2). Their disease site specialization included cancers of the breast, head and neck, melanoma, and gastrointestinal and genitourinary tracts. A total of 48 patients with cancer completed the online survey. No patient information was collected because the survey was anonymous.
Eight oncology-specific, COVID-19–related scenarios (Table 2) were identified by these 8 physicians based on recent direct patient responses they encountered or patient responses that they believed would arise. These scenarios were (1) worse outcomes from COVID-19, (2) delay in cancer screening, (3) delay in diagnostic workup, (4) delay in initiation of treatment, (5) offer of nonstandard treatment, (6) treatment breaks, (7) delay in follow-up imaging or care, and (8) inability to be admitted into the hospital for management. Patients with cancer may be concerned about contracting COVID-19 given reports that they are likely to experience worse outcomes than those without preexisting conditions. These patients may be due for additional screening that must be delayed because of the pandemic, such as a chest computed tomography scan for those who completed head and neck cancer treatment. Diagnostic screening may also be delayed, such as a bronchoscopy for those with lung cancer. Initiation of treatment may be deferred; according to 1 physician, “I’m having to tell patients they can’t have surgery, and I don’t [know] when they’ll be able to.” Patients may be presented with nonstandard treatment options, as 1 physician reported, “When explaining why a certain treatment option isn’t available right now, a patient responded with, ‘Why do you get to choose who lives and who dies?’” After high-risk exposure to COVID-19, patients may be asked to take a treatment break, such as a break from radiotherapy. Follow-up imaging scans may also be deferred, and hospital admission for cancer management may be restricted to certain situations.
The open-ended responses from patients with cancer illuminated their perspectives on these 8 physician-identified scenarios. Regarding the worse outcomes from COVID-19, patients raised their fears about being vulnerable (“Am I more susceptible to getting the virus?”) or not being able to prevent contracting the virus. Regarding delays in cancer screening, patients were worried about the late discovery of a new malignant neoplasm (“What if my cancer comes back and by the time I do get screened it’s too late?”). Regarding diagnostic workup delays, patients weighed the seriousness of cancer against COVID-19 (“Why is COVID considered more critical than cancer?”). When asked about delaying the initiation of treatment, patients had strong emotions, stating, “Why am I being punished when I followed directions and made sure to self-isolate?”
In situations in which patients may be offered nonstandard treatment, patients noted feeling unimportant (“You’re making me feel that my care and health aren’t important to you.”). Regarding the necessity of treatment breaks, patients raised the likelihood of bad outcomes (“This sounds like a death sentence.”). Regarding delaying follow-up imaging or care, patients expressed feelings of abandonment (“You’re leaving me to deal with this alone.”). For most scenarios, patient reactions involved anger, fear, and anxiety (eg, “I’m scared”; “This isn’t fair. I am upset.”).
These emotional patient responses informed the selection of the 3 general communication principles by the health communication experts. The final communication guide summarized these overarching principles and suggested language to guide clinicians. The 3 principles and sample use are presented in Table 1. Table 2 shows how these principles can be applied by oncologists to each of the 8 scenarios. The full communication guide with additional examples is available in the eAppendix in the Supplement.
As oncologists face new clinical challenges in cancer care during the COVID-19 pandemic,14 they may encounter scenarios such as those described herein. In this environment, oncologists may find advantages to implementing the communication principles and techniques presented. These principles and strategies were informed by insights from the experiences of both physicians and patients with cancer. Ensuring good communication during the pandemic is one way to preserve critical relationships between patients and oncologists.15
This study has some limitations. Because of the urgency of creating a communication guide, not all stakeholder perspectives were represented. Although a diverse group of health communication experts were involved, the physician and patient participants were from a single academic medical center. As such, their experiences may not be representative of clinical encounters in other contexts. Nevertheless, we believe that this effort produced an important, evidence-based guide, the use of which should be evaluated in future studies.
This qualitative study provides a practical guide for communication in cancer care during the COVID-19 pandemic. We believe that it fulfills an urgent need for patients and oncologists.
Accepted for Publication: June 2, 2020.
Corresponding Author: Reshma Jagsi, MD, DPhil, Department of Radiation Oncology, University of Michigan, 1500 E Medical Center Dr, UHB2C490, SPC 5010, Ann Arbor, MI 48109 (email@example.com).
Published Online: August 6, 2020. doi:10.1001/jamaoncol.2020.2980
Author Contributions: Dr Gharzai had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.
Concept and design: All authors.
Acquisition, analysis, or interpretation of data: Gharzai, An.
Drafting of the manuscript: All authors.
Critical revision of the manuscript for important intellectual content: Gharzai, An, Jagsi.
Administrative, technical, or material support: Gharzai, Resnicow, An.
Supervision: Gharzai, An, Jagsi.
Conflict of Interest Disclosures: Dr Jagsi reported receiving grants from the National Institutes of Health, Doris Duke Foundation, Komen Foundation, Blue Cross Blue Shield of Michigan, and Genentech; grants and personal fees from the Greenwall Foundation; personal fees from Amgen, Vizient, Sherinian and Hasso, and Dressman, Benziger, Lavelle outside the submitted work; and stock options for service as an advisor for RJ Equity Quotient. No other disclosures were reported.
Additional Contributions: Anthony Back, MD, University of Washington, and staff of VitalTalk, Seattle, Washington, provided invaluable guidance to clinicians having challenging coronavirus disease 2019 conversations and inspired the development of this guide for patients with cancer. The following people assisted in the development of this oncology-specific guide: Christine Veenstra, MD, Department of Medical Oncology, University of Michigan; Sarah Hawley, PhD, MPH, Department of Internal Medicine, University of Michigan; Diane Egleston, MPH, Center for Health Communications Research, University of Michigan; Colleen Sullivan Leh, BFA, Center for Health Communications Research, University of Michigan; Elizabeth Hershey, MS, Center for Health Communications Research, University of Michigan; Nicole Fawcett, BA, Director of Communications, University of Michigan Rogel Cancer Center; Theodore S. Lawrence, MD, PhD, Department of Radiation Oncology, University of Michigan; David Smith, MD, Department of Medical Oncology, University of Michigan; Keith Casper, MD, Department of Otolaryngology, University of Michigan; Michael S. Sabel, MD, Department of Surgery, University of Michigan; Donna Murphy, LMSW, Patient and Family Support Services Program, University of Michigan; Michele Heisler, MD, MPA, Department of Internal Medicine, University of Michigan; Marsha Benz, MPH, MA, University Health Services, University of Michigan; Molly White, MPH, Office of Patient Experience, University of Michigan; Delwyn Catley, PhD, Department of Pediatrics, Children's Mercy Kansas City; Kathy Goggin, PhD, Department of Pediatrics, Children's Mercy Kansas City; and Geoffrey Williams, MD, PhD, Department of Internal Medicine, University of Rochester. These individuals received no additional compensation, outside of their usual salary, for their contributions.