key: cord-0997621-yct9fu8r authors: Hyland, Kelly A.; Jim, Heather S.L. title: Behavioral and psychosocial responses of people receiving treatment for advanced lung cancer during the COVID‐19 pandemic: a qualitative analysis date: 2020-06-16 journal: Psychooncology DOI: 10.1002/pon.5445 sha: dc6f47f9b37eed86ea2ce154bbaa6577e7090a7a doc_id: 997621 cord_uid: yct9fu8r nan Current available information suggests that people age 65+, those with underlying medical conditions such as lung disease, people with weakened immune systems, and people undergoing cancer treatment may be at increased risk for severe illness from the novel coronavirus (COVID-19). 1, 2 Lung cancer patients are likely to have some if not all of these risk factors, placing them at particularly high risk for severe outcomes. 3 Several publications have commented on the challenges of delivering oncology care during the COVID-19 pandemic. [4] [5] [6] However, very little is known to date on the experiences of patients receiving oncology care during this time. Qualitative inquiry represents the best available tool for capturing social responses to a pandemic. 7 This cross-sectional, qualitative analysis explored cancer patients' perceptions of and behavioral and psychosocial responses to COVID-19. Patients' naturalistic discussion of COVID-19 and response to a question about behavior change in response to COVID-19 during semi-structured interviews were analyzed to identify themes and characterize patients' perspectives and experience. The current analysis examined qualitative data from a convenience sample of participants in a larger study evaluating the relationship of hope, goals, and psychological well-being in people with advanced stage lung cancer. Eligibility criteria for the larger study were: 1) diagnosed with advanced stage lung cancer (AJCC Stage IIIB or IV for non small cell lung cancer (NSCLC), extensive stage for small cell lung cancer (SCLC)), 2) >18 years old, 3) no previous history of cancer, 4) undergoing first line systemic treatment for lung cancer at Moffitt Cancer Center, 5) English-speaking, 6) able to provide informed consent. After providing informed consent, participants completed a baseline questionnaire and semi-structured interview about their current goals. One month later participants completed a follow-up questionnaire and semi-structured interview about perceived progress toward current goals. Participants due for follow-up from March 20, 2020 to May 8, 2020 completed procedures via mail and telephone. Participants spontaneously discussed COVID-19 during follow-up interviews, including how the pandemic had impacted their lives and progress toward current goals. At the end of the interview, participants were asked whether they had changed their behavior in response to COVID-19 and, if yes, how. Interviews were audio recorded. At the time of interview, no participants were reporting symptoms suggesting the presence of COVID-19. Participants' naturalistic mentions of COVID-19 during follow-up interviews and discussion of behavior change in response to the pandemic were analyzed. Analyses were rooted in grounded theory and themes were derived inductively as they emerged from the data. 8 While interviews were ongoing, authors familiarized themselves with the data by reviewing audio tapes (KH) and identifying participant mentions of COVID-19. Relevant portions of interviews were transcribed (KH) and interview notes and transcriptions were reviewed (KH, HJ) to identify key themes. Participant characteristics are presented (Table 1 ). Several key themes emerged from the data. Main attributes of each theme are described, and exemplary quotes are displayed ( Table 2) . Cancer as the primary health threat. In general, cancer remained patients' primary concern. Patients varied in the degree to which they expressed COVIDrelated concerns. Those with more severe side effects focused on cancer-related concerns, while patients who were stable on treatment emphasized the threat of COVID-19. Most were focused on COVID-19 to the extent that it may interact with their cancer, and acutely felt the compound threat to their health. Changes in oncology practice and access to cancer care. Participants commented on changes in the delivery of their cancer care (e.g., virtual visits). Participants had mixed feelings on COVID-19-related policies (e.g., no visitors), but emphasized the criticalness of continuing to receive treatment. Participants cited awareness of the threat of mortality related to their lung cancer. COVID-19 posed an additional threat of mortality, and patients endorsed heightened perceived risk for poor outcomes should they contract COVID-19 due to their lung cancer. Behavioral and psychosocial responses to COVID-19. All participants reported changing their behavior in response to COVID-19. Some were accustomed to taking health-related precautions because of their cancer. Participants endorsed making changes consistent with general guidelines but with greater intensity because of the perceived higher stakes if they were exposed. Participants also endorsed additional, more significant changes related to their compromised health status. Patients reported feeling scared and frustrated by the pandemic, and some endorsed increased anxiety and depressive symptoms. Participants, particularly those who were unpartnered, reported feeling lonely. Patients discussed different ways of coping, including spirituality and social support. While most reported limiting social contact, some continued to see family and friends under particular conditions. Participants received tangible support from friends and neighbors used technology to stay connected with loved ones. Sense of loss/mourning. Participants mourned the things that cancer had taken from them and how COVID-19 had taken even more. Participants discussed how meaningful activities and experiences had been interrupted or cancelled, and expressed uncertainty about future plans given their health and COVID-19. Some were frustrated that their independence was compromised. Positive reinterpretation/greater appreciation for life. Despite the challenges posed by cancer and COVID-19, participants saw the "silver lining". Patients emphasized things that they were able to do and expressed appreciation for everyday things. This qualitative analysis adds value by providing novel insight into the COVID-19 pandemic from the patient perspective in near real-time. Several key themes related to patients' experiences and responses to COVID-19 were identified that may not be readily apparent during clinical encounters, but have implications for oncology providers. People with advanced cancer are in a uniquely difficult position as they navigate a new health threat on top of receiving treatment for life-limiting illness. Providers should inquire about practical and psychosocial challenges patients may encounter and problem solve solutions. It is important to recognize that changes in oncology practice may impact patients in different ways. While for some telemedicine offers convenience and reduces risk of exposure, others may miss the in-person clinical encounter. Additionally, clinicians should be aware that typical sources of support may not be available and consider ways to increase patient comfortability (e.g., teleconference family). The suspension or cancellation of usual activities or meaningful experiences due to COVID-19 may be particularly devastating for patients with life-limiting illness given significant uncertainty about their health and the future. Patients expressed a sense of loss about what cancer had already taken from them, and how this was compounded by limitations imposed by COVID-19. Clinicians can empathize with patients' sense of mourning while continuing to serve as a trusted authority on recommended health-related precautions. Fear, frustration, sadness, and loneliness are common and justified emotions during a global pandemic. However, these emotions may be particularly challenging for patients with a history of anxiety or depression, or who are already experiencing heightened distress related to cancer. Greater loneliness has been associated with worse quality of life and greater depressive symptomology in lung cancer patients, highlighting the potential negative consequences of COVID-19-related isolation for patient wellbeing. 9 Clinicians should regularly screen for symptoms of distress and loneliness using brief, validated measures 10 and continue to refer patients to psychosocial services when appropriate. Results of this small, exploratory study provide a snapshot of the experience of patients with advanced cancer at a single academic cancer center during the COVID-19 pandemic. All participants were non-Hispanic White, limiting the generalizability of study findings to patients from racial and ethnic minority groups. Additionally, findings may not reflect the experience of patients receiving care in other regions where the impact of COVID-19 may be different, or in the community setting. Importantly, qualitative analysis highlights the unique challenges and resilience of advanced cancer patients during COVID-19. Oncology providers are well positioned to assess for practical and psychosocial challenges and refer for psychosocial services as needed. This article is protected by copyright. All rights reserved. Apr 27]. Available from: https://www.nccn.org/about/permissions/thermometer.aspx Centers for Disease Control and Prevention Cancer patients in SARS-CoV-2 infection: a nationwide analysis in China. The Lancet Oncology Patients with cancer appear more vulnerable to SARS-COV-2: a multi-center study during the COVID-19 outbreak Cancer guidelines during the COVID-19 pandemic. The Lancet Oncology Oncology Practice During the COVID-19 Pandemic Managing patients with cancer during the COVID-19 pandemic: frontline experience from Wuhan. The Lancet Oncology Methods in the Time of COVID-19: The Vital Role of Qualitative Inquiries The Constant Comparative Method of Qualitative Analysis Loneliness as a mediator of the relationship of social cognitive variables with Funding: This work was supported in part by the National Cancer Institute (P30 CA076292) and the Population Research, Interventions, and Measurement Core Facility at the H. Lee Moffitt Cancer Author Disclosures: Heather S. L. Jim reports consulting for RedHill BioPharma, Janssen Scientific Affairs, and Merck Data Availability Statement: The data underlying this article will be shared on reasonable request to the corresponding author The authors would like to thank Paul Jacobsen, Ph.D. for his assistance with the manuscript.