Perspectives on Oncology-Specific Language During the Coronavirus Disease 2019 Pandemic: A Qualitative Study.

ABSTRACT

IMPORTANCE 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. OBJECTIVES: 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. INTERVENTIONS: 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. RESULTS: 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.