key: cord-0706701-l657zgns authors: Aslakson, Rebecca; Siden, Rachel; Verano, Mae; Holdsworth, Laura; Braun, Nathaniel; Tabor, Holly; Wong, Bonnie; Colborn, Kathryn; Smith, Shelby; Lira, Isaac; Hallahan, Caroline; Nudotor, Richard; Siddiqi, Amn; Harris, Elizabeth; Days-Yancey, Kemba; Nasso, Shelley Fuld; Rickerson, Elizabeth; Fahy, Bridget; Waterman, Brittany; Johnston, Fabian; Smith, Thomas; Schapira, Lidia title: A Tale of Two Pandemics: Cancer Coping and Care Delivery During the COVID-19 Pandemic (RP402) date: 2022-06-30 journal: Journal of Pain and Symptom Management DOI: 10.1016/j.jpainsymman.2022.04.043 sha: f094c1666aa2036d3e5586d2f15c2675e36a5800 doc_id: 706701 cord_uid: l657zgns Outcomes 1. Understand how to prepare cancer and palliative care delivery systems for future COVID-related surges or pandemics that necessitate changes in delivery of cancer and palliative care services 2. Understand cancer and palliative care clinician burnout Importance The COVID-19 pandemic profoundly disrupted cancer and palliative care delivery. Objectives Use mixed methods to explore the impact of the pandemic on cancer and palliative care delivery among cancer patients, family caregivers, and cancer and palliative care clinicians. Methods Quality-of-life and COVID-specific surveys were distributed to cancer patients and family caregivers in four US geographic areas. In-depth interviews were conducted with cancer patients, family caregivers, and cancer and palliative care clinicians. Results From August 2020 through July 2021, data were collected in Baltimore, MD; Boston, MA; Albuquerque, NM; and Stanford, CA and include 499 surveys from 188 cancer patients and 26 family caregivers and 71 interviews from 48 cancer patients, 4 family caregivers, and 19 cancer and palliative care clinicians. Participants included patients who were recently diagnosed, those who were undergoing active anticancer treatment or had completed treatment, and those receiving end-of-life care. Three patients contracted COVID, with all having mild disease. There were no associations between quality-of-life and/or mood scores and regional COVID surges. Both cancer patients and family caregivers reported good COVID and cancer coping and noted more concern about cancer. Telehealth was widely used and well received. 58% of surveys documented the respondent receiving a recent cancer treatment, but only 5.3% reported knowledge of any COVID-related treatment change. These data contrast with reports from cancer and palliative care clinicians who noted widespread pandemic-related changes in treatment and experienced severe personal anxiety, fatigue, burnout, and moral distress. Conclusions In a large and geographically diverse sample, cancer patients and family caregivers coped well with the pandemic and were generally unaware of pandemic-related cancer care changes. In contrast, cancer and palliative care clinicians reported widespread cancer care delivery changes and significant personal pandemic-related anxiety, fatigue, burnout, and moral distress. Impact Although cancer and palliative care delivery systems sufficiently supported patients and family caregivers during the pandemic with both groups noting good coping, cancer and palliative care clinicians reported significant pandemic-related anxiety, fatigue, burnout, and moral distress. 1. Estimate the psychosocial and health outcomes of parents 6 to 24 months after the death of a child from cancer 2. Describe the relationship between parental social functioning and other parental outcomes (i.e., depression, anxiety, complicated grief, resiliency, social support, and posttraumatic growth) Importance. Prior research on parental bereavement is plagued by recall bias because it includes parents many years after the death of their child. As a result, there is poor understanding of what outcomes are "typical" early in bereavement. Objectives. To provide a comprehensive estimation of the psychosocial sequelae of parents early in their bereavement and examine the relationship between psychosocial sequelae and social functioning. Methods. We conducted a cross-sectional, dual site, survey-based study of parents 6 to 24 months after the death of their child from cancer. Results. 125 (29%) parents from 87 (37.3%) households completed the survey; respondents were mostly women (63%) and identified as White (80%) and not Hispanic (91%). Bereaved parents had slightly lower social functioning than the general population, with a median T score of 44 (interquartile range 41.1, 49.5). Fifty-five (44%) parents met criteria for depression, 45 (26.3%) for anxiety, 54 (43.5%) for posttraumatic stress syndrome (PTSS), and 31 (25.2%) for prolonged grief. Women had higher scores for anxiety (p = 0.01), depression (p = 0.008), and prolonged grief (p = 0.02). Bereaved parents had lower resilience scores compared to nonbereaved parents of children with cancer (mean 25.5 vs. 30, p < 0.001), yet 81 (66.4%) parents expressed moderate or high levels of posttraumatic growth. Better social functioning was highly negatively correlated with depression, anxiety, and PTSS (Spearman's correlation −0.76, −0.71, and −0.69, respectively) and positively correlated with posttraumatic growth and resilience (0.69 and 0.34, respectively). Conclusion. Recently bereaved parents, especially mothers, experience moderate rates of depression, anxiety, PTSS, and prolonged grief. However, most parents indicate posttraumatic growth. High social functioning is related to less negative psychosocial outcomes. Impact. Positive and negative psychosocial outcomes are typical in early parental bereavement, and screening for low social functioning may be helpful to identify parents at risk for worse outcomes, with a view to early intervention. 1. Understand how to prepare cancer and palliative care delivery systems for future COVID-related surges or pandemics that necessitate changes in delivery of cancer and palliative care services 2. Understand cancer and palliative care clinician burnout Importance. The COVID-19 pandemic profoundly disrupted cancer and palliative care delivery. Objectives. Use mixed methods to explore the impact of the pandemic on cancer and palliative care delivery among cancer patients, family caregivers, and cancer and palliative care clinicians. Methods. Quality-of-life and COVID-specific surveys were distributed to cancer patients and family caregivers in four US geographic areas. In-depth interviews were conducted with cancer patients, family caregivers, and cancer and palliative care clinicians. Results. From August 2020 through July 2021, data were collected in Baltimore, MD; Boston, MA; Albuquerque, NM; and Stanford, CA and include 499 surveys from 188 cancer patients and 26 family caregivers and 71 interviews from 48 cancer patients, 4 family caregivers, and 19 cancer and palliative care clinicians. Participants included patients who were recently diagnosed, those who were undergoing active anticancer treatment or had completed treatment, and those receiving end-of-life care. Three patients contracted COVID, with all having mild disease. There were no associations between quality-of-life and/or mood scores and regional COVID surges. Both cancer patients and family caregivers reported good COVID and cancer coping and noted more concern about cancer. Telehealth was widely used and well received. 58% of surveys documented the respondent receiving a recent cancer treatment, but only 5.3% reported knowledge of any COVID-related treatment change. These data contrast with reports from cancer and palliative care clinicians who noted widespread pandemic-related changes in treatment and experienced severe personal anxiety, fatigue, burnout, and moral distress. Conclusions. In a large and geographically diverse sample, cancer patients and family caregivers coped well with the pandemic and were generally unaware of pandemic-related cancer care changes. In contrast, cancer and palliative care clinicians reported widespread cancer care delivery changes and significant personal pandemic-related anxiety, fatigue, burnout, and moral distress. Impact. Although cancer and palliative care delivery systems sufficiently supported patients and family caregivers during the pandemic with both groups noting good coping, cancer and palliative care clinicians reported significant pandemic-related anxiety, fatigue, burnout, and moral distress. Cancer Hospice Caregivers' Self-Care Behaviors: The Role of Mental Health, Burden, and Perceptions of Competency (RP403) Identify 2 or 3 self-care behaviors that hospice family caregivers commonly under-engage in 2. Discuss 3 or 4 hospice family caregiver characteristics associated with lower odds of self-care behaviors Importance. Hospice family caregivers (HFCs) provide intensive physical and emotional support of patients at the end of life The purpose of this secondary data analysis is to examine sociodemographic and caregiving factors associated with HFC self-care HFCs of cancer patients were purposively recruited from hospices in 4 US states. The relationships between sociodemographic (e.g., race and ethnicity, age, employment, gender, co-residence), caregiver factors (Medical Outcomes Survey−Social Support, Zarit Burden Inventory, Caregiving Competency Scale, PROMIS−mental health), and caregivers' self-care behaviors were examined with logistic regression models Almost half reported not having enough time to slow down and rest when they got sick (48.91%), get enough rest in general