The impact of negative COVID-19 experiences on cancer survivors' health-related quality of life and psychological distress: a moderated mediation model.

Introduction: Cancer survivors experienced poorer health-related quality of life (HRQoL) and greater psychological distress during the COVID-19 pandemic than those without cancer. However, the underlying mechanisms that may explain how negative experiences during the pandemic are associated with distress and HRQoL remain unknown. We examined whether psychosocial risk factors (i.e., healthcare disruption, disruption to daily activities and social interaction [DDASI], and financial hardship) mediated the relationship between negative COVID-19-related experiences and cancer survivors' HRQoL and psychological distress (i.e., depressive symptoms, and anxiety) and whether the mediating effects were moderated by psychosocial protective factors (i.e., stress management ability and social support). Methods: A total of 9,651 cancer survivors completed a questionnaire assessing negative COVID-19-related experiences, psychosocial and practical experiences, and HRQoL. Conditional process analysis was used to evaluate the proposed moderated mediation models. Results: Participants had a mean age of 63.8 years (SD = 12.3) and were mostly non-Hispanic White (82.3%). DDASI and financial hardship mediated the relationship between negative COVID-19-related experiences and cancer survivor's HRQoL and psychological distress. Stress management ability buffered the indirect effect of DDASI on cancer survivors' HRQoL and psychological distress. Social support buffered the indirect effect of financial hardship on HRQoL and depressive symptoms. Conclusion: Financial resources and social interactions may buffer negative effects of major disruptions such as the COVID-19 pandemic. Future studies should assess the longitudinal impact of these associations.

Impact of COVID-19-related experiences on health-related quality of life in cancer survivors in the United States.

OBJECTIVE: Little evidence exists on the impact of the COVID-19 pandemic on cancer survivors, limiting recommendations to improve health-related quality of life (HRQoL) in this population. We describe survivors' pandemic experiences and examine associations between COVID-19-related exposures, psychosocial experiences, and HRQoL. METHODS: Between May 2020-April 2021, survivors completed cross-sectional questionnaires capturing COVID-19-related exposures (e.g., exposure to virus, job loss); psychosocial experiences (i.e., COVID-19-related anxiety/depression, disruptions to health care and daily activities/social interactions, satisfaction with providers' response to COVID, financial hardship, perceived benefits of the pandemic, social support, and perceived stress management ability); and HRQoL. RESULTS: Data were collected from N = 11,325 survivors in the United States. Participants were mostly female (58%), White (89%) and non-Hispanic (88%), and age 63 on average. Breast cancer was the most common diagnosis (23%). Eight percent of participants reported being exposed to COVID-19; 1% tested positive. About 6% of participants lost their jobs, while 24% lost household income. Nearly 30% avoided attending in-person oncology appointments because of the pandemic. Poorer HRQoL was associated with demographic (younger age; female; non-Hispanic White), clinical (Medicare; stage IV disease; hematologic/digestive/respiratory system cancer), and psychosocial factors (low perceived benefits and stress management ability; more disruption to health care and daily activities/social interactions; financial hardship). CONCLUSIONS: COVID-19-related stressors were associated with various psychosocial experiences in cancer survivors, and these psychosocial experiences were associated with HRQoL above and beyond demographic and clinical factors.

Risk factors and health behaviors associated with loneliness among cancer survivors during the COVID-19 pandemic.

Loneliness may exacerbate poor health outcomes particularly among cancer survivors during the COVID-19 pandemic. Little is known about the risk factors of loneliness among cancer survivors. We evaluated the risk factors of loneliness in the context of COVID-19 pandemic-related prevention behaviors and lifestyle/psychosocial factors among cancer survivors. Cancer survivors (n = 1471) seen at Huntsman Cancer Institute completed a survey between August-September 2020 evaluating health behaviors, medical care, and psychosocial factors including loneliness during COVID-19 pandemic. Participants were classified into two groups: 'lonely' (sometimes, usually, or always felt lonely in past month) and 'non-lonely' (never or rarely felt lonely in past month). 33% of cancer survivors reported feeling lonely in the past month. Multivariable logistic regression showed female sex, not living with a spouse/partner, poor health status, COVID-19 pandemic-associated lifestyle factors including increased alcohol consumption and marijuana/CBD oil use, and psychosocial stressors such as disruptions in daily life, less social interaction, and higher perceived stress and financial stress were associated with feeling lonely as compared to being non-lonely (all p < 0.05). A significant proportion of participants reported loneliness, which is a serious health risk among vulnerable populations, particularly cancer survivors. Modifiable risk factors such as unhealthy lifestyle behaviors and psychosocial stress were associated with loneliness. These results highlight the need to screen for unhealthy lifestyle factors and psychosocial stressors to identify cancer survivors at increased risk of loneliness and to develop effective management strategies.

Development and initial psychometric evaluation of a COVID-related psychosocial experiences questionnaire for cancer survivors.

BACKGROUND: Cancer survivors are at elevated risk of psychological problems related to COVID-19, yet no published measure adequately assesses their psychosocial experiences during the pandemic. PURPOSE: Describe the development and factor structure of a comprehensive, self-report measure (COVID-19 Practical and Psychosocial Experiences questionnaire [COVID-PPE]) assessing the pandemic's impact on US cancer survivors. METHODS: The sample (n = 10,584) was divided into three groups to assess COVID-PPE factor structure by conducting: (1) initial calibration/exploratory analysis of the factor structure of 37 items (n = 5070), (2) confirmatory factor analysis of the best-fitting model (36 items after item removal; n = 5140), and (3) post-hoc confirmatory analysis with an additional six items not collected in the first two groups (42 items; n = 374). RESULTS: The final COVID-PPE was divided into two sets of subscales, conceptualized as Risk Factors and Protective Factors. The five Risk Factors subscales were labeled Anxiety Symptoms, Depression Symptoms, Health Care Disruptions, Disruptions to Daily Activities and Social Interactions, and Financial Hardship. The four Protective Factors subscales were labeled Perceived Benefits, Provider Satisfaction, Perceived Stress Management Skills, and Social Support. Internal consistency was acceptable for seven subscales (αs = 0.726-0.895; ωs = 0.802-0.895) but poor or questionable for the remaining two subscales (αs = 0.599-0.681; ωs = 0.586-0.692). CONCLUSIONS: To our knowledge, this is the first published self-report measure comprehensively capturing psychosocial impact-both positive and negative-of the pandemic on cancer survivors. Future work should evaluate predictive utility of COVID-PPE subscales, particularly as the pandemic evolves, which may inform recommendations for cancer survivors and facilitate identification of survivors most in need of intervention.

Financial toxicity among head and neck cancer patients and their caregivers: A cross-sectional pilot study.

Objectives: Head and neck cancer (HNC) patients experience greater financial toxicity than other cancer patients. Research on financial toxicity has concentrated on patients despite many informal caregivers sharing finances and reducing work hours to provide patient care. Thus, our pilot study: (1) assessed the feasibility of financial toxicity screening of HNC patients and their caregivers, and (2) described financial toxicity levels of HNC patients and their caregivers. Methods: We surveyed English-speaking adult HNC patients initiating treatment at a National Cancer Institute-designated Comprehensive Cancer Center and their informal caregivers. This survey assessed demographics and financial toxicity through the Comprehensive Score for Financial Toxicity (COST) measure (0-44 range; lower score indicates higher financial toxicity). Screening feasibility was defined as ≥50% consent rate and ≥60% data completion rate. Results: Our sample included 27 HNC patients and 9 caregivers. They both had slightly lower consent and completion rates than our goals. Patients reported a median COST score of 27 while caregivers reported a median COST score of 16. Approximately 25.9% of patients and 44.4% of caregivers reported high financial toxicity (COST < 17.5). Caregivers reported high concerns about their future financial health and their ability to control the amount of their financial contributions to the patient's care. Conclusions: Patients and caregivers may require additional outreach approaches beyond emailed questionnaires to screen for their financial toxicity systematically. Future research is needed to replicate our results to determine whether differences in financial toxicity occur between patients and caregivers and identify areas of focus for interventions. Level of evidence: IV.

Spouse caregivers' identification of the patient as their primary support person is associated with better patient psychological well-being.

Examine the impact of the primary-support person (PSP) role on advanced cancer patient and spouse caregiver psychological well-being, above and beyond the effects of relationship satisfaction.Secondary analysis of cross-sectional questionnaire data.88 advanced cancer patient/spouse-caregiver dyads.Patients and caregivers independently completed measures assessing depression, anxiety, perceived stress, and relationship satisfaction, and identified their PSP. Patient and caregiver psychological well-being outcomes were regressed on patient and caregiver PSP variables in an actor-partner interdependence model.Half of patients identified their caregiver as PSP; 9% of caregivers identified their patient as PSP. When caregivers identified their patient as PSP, the patient reported better outcomes. No associations were seen for patient identification of caregiver as PSP or caregiver well-being.Clinicians can encourage patients to find ways to continue to focus on their relationship with the caregiver and help caregivers connect with other sources of support.

Positive Psychology Approaches to Interventions for Cancer Dyads: A Scoping Review.

OBJECTIVE: Positive psychology approaches (PPAs) to interventions focus on developing positive cognitions, emotions, and behavior. Benefits of these interventions may be compounded when delivered to interdependent dyads. However, dyadic interventions involving PPAs are relatively new in the cancer context. This scoping review aimed to provide an overview of the available research evidence for use of dyadic PPA-based interventions in cancer and identify gaps in this literature. METHODS: Following PRISMA guidelines, we conducted a scoping review of intervention studies that included PPAs delivered to both members of an adult dyad including a cancer patient and support person (e.g., family caregiver, intimate partner). RESULTS: Forty-eight studies, including 39 primary analyses and 28 unique interventions, were included. Most often (53.8%), the support person in the dyad was broadly defined as a "caregiver"; the most frequent specifically-defined role was spouse (41.0%). PPAs (e.g., meaning making) were often paired with other intervention components (e.g., education). Outcomes were mostly individual well-being or dyadic coping/adjustment. CONCLUSIONS: Wide variability exists in PPA type/function and their targeted outcomes. More work is needed to refine the definition/terminology and understand specific mechanisms of positive psychology approaches.

Patient-caregiver dyads in pancreatic cancer: identification of patient and caregiver factors associated with caregiver well-being.

We aimed to examine the psychosocial well-being in the pancreas cancer patient-caregiver dyad, and determine patient and caregiver characteristics that predict caregiver distress. This was a cross-sectional, observational study. Demographics and caregiving characteristics were gathered from patients and caregivers. Caregivers completed validated instruments investigating anxiety, depression, perceived stress and caregiver burden. Over a period of eleven months, 128 patient-caregiver dyads were enrolled. Patient and caregiver distress scores were not associated with patient clinical disease burden. Patient distress was a significant predictor of concurrent caregiver distress, anxiety, depression, and perceived burden. Younger caregivers were also associated with higher caregiver anxiety and perceived burden. Additionally, number of caregiving activities and caregiver overall health status were predictors of concurrent caregiver depression and perceived stress. Certain pancreatic cancer patient and caregiver variables may negatively impact the well-being of caregivers. Future efforts should focus on development and implementation of comprehensive caregiver support programs for those at risk for psychosocial distress.

Who benefits from an eHealth-based stress management intervention in advanced prostate cancer? Results from a randomized controlled trial.

OBJECTIVE: Conduct a secondary analysis to examine the effects of a tablet-delivered, group-based cognitive-behavioral stress management (CBSM) intervention for reducing symptom burden among men with advanced prostate cancer (APC) and elevated baseline levels of symptom burden. METHODS: A total of 192 men with APC were randomized to either a CBSM or a health promotion condition and followed for one year. Six analytical samples were included in our study, each including participants who reported elevated levels of burden for the corresponding outcome at baseline. Outcomes included five domains of symptom-related quality of life (urinary incontinence n = 98; urinary irritation n = 61; bowel function n = 43; sexual function n = 177; and hormonal function n = 149) and depression (n = 31). Repeated measures mixed models were used to detect within- and between-group changes in outcomes. RESULTS: Regardless of condition, participants with elevated symptom burden or mild-to-severe depression showed short-term (6-month) improvements in urinary irritation, bowel function, hormonal function, and depression scores. Only participants in the CBSM condition showed short-term (6-month) improvements in urinary incontinence, and long-term (12-month) improvements in urinary irritation, bowel function, hormonal function, and depression scores. CONCLUSIONS: Our findings suggest that targeting a web-based CBSM intervention to recipients most likely to benefit (elevated levels of symptom burden) can improve several domains of symptom-related quality of life and depressive symptoms in men with APC.

Daily partner responsiveness and everyday sleep outcomes in breast cancer survivors and their partners.

PURPOSE: Breast cancer (BC) survivors and their intimate partners face several adverse consequences from the cancer experience, including sleep disturbance, which is a common side effect of BC and its treatment. Sleep has been conceptualized and examined as an individual phenomenon despite most adults sharing a bed/room with a partner. Limited research has examined the associations between daily relationship processes and sleep in couples coping with cancer. Using an intensive longitudinal design, the present study examined the daily, within-person links between attempted and perceived partner responsiveness and subjective sleep. METHODS: Immediately following adjuvant treatment, 72 early-stage BC survivors and their intimate partners (144 paired individuals) reported on daily attempted and perceived partner responsiveness each evening and subjective sleep each morning for 21 consecutive days. RESULTS: Survivor and partner reports of partner responsiveness were associated with their own subjective sleep, such that greater attempted and perceived partner responsiveness were associated with improvements in one's own subjective sleep. Effects of one participant's partner responsiveness on their partner's sleep were not observed. CONCLUSIONS: Findings suggest that among couples coping with early-stage BC, increased partner responsiveness is associated with subsequent improvements in subjective sleep. IMPLICATIONS FOR CANCER SURVIVORS: Sleep disturbance is a serious concern for BC survivors and their intimate partners. Future research should assess intimacy processes as a potential method to improve BC survivor and partner sleep.

Fear of Cancer Recurrence and Sleep in Couples Coping With Early-Stage Breast Cancer.

BACKGROUND: Fear of cancer recurrence (FCR) and sleep disturbance are common in cancer survivors. Yet, little research has examined their relationship, and even less is known about what links may exist between these variables among the intimate partners of cancer survivors. PURPOSE: This study examines the relationship between FCR and sleep disturbance in breast cancer survivors and their partners. Using daily sleep data collected at two distinct periods early in survivorship-the completion of adjuvant treatment and the first post-treatment mammogram-higher survivor and partner FCR was hypothesized to predict greater sleep disturbance. METHODS: Breast cancer survivors and intimate partners (N = 76 couples; 152 individuals) each reported sleep duration, sleep quality, sleep onset latency, and wake after sleep onset each morning of two 21-day sleep diary bursts during the first year post-diagnosis. Three validated measures formed latent FCR factors for survivors and partners, which were used to predict average daily sleep. RESULTS: Across both sleep diary bursts, survivor FCR was associated with their own reduced sleep duration, reduced sleep quality, and greater sleep onset latency. Survivor FCR was also associated with their partners' reduced sleep quality and greater sleep onset latency. Partner FCR was associated with their own reduced sleep duration, reduced sleep quality, and greater sleep onset latency. Partner FCR was also associated with survivors' reduced sleep quality. CONCLUSIONS: Findings revealed intrapersonal and interpersonal associations between FCR and sleep disturbance, addressing gaps in knowledge on FCR and an outcome with known short- and long-term implications for health and mortality.

"It's Kind of Complicated": A Qualitative Exploration of Perceived Social Support in Young Adult and Young Adult Lesbian, Gay, Bisexual, Transgender, and/or Queer Cancer Survivors.

Purpose: This qualitative secondary analysis describes the perceived importance of familial, peer, and health system social support for an understudied group of cancer survivors: young adults (YAs), including those who are lesbian, gay, bisexual, transgender, and/or queer (LGBTQ). Methods: Semistructured interviews were conducted with YA cancer survivors as part of a study of social support networks and interactions. Team members conducted content analysis of interview transcripts; coding decisions were reviewed and discussed among the research team. Descriptions of social support were ultimately organized around family, peer, and health care system support. Results: Twelve YA survivors recruited using two National Cancer Institute (NCI)-designated Comprehensive Cancer Centers and social media participated between August 2019 and May 2020. Survivors averaged 28.2 years old. Half of survivors self-identified as female; four survivors were LGBTQ. Participants described both the positives of social support, as well as barriers to meeting support needs, within the following three levels: familial, peer, and health care providers or system. Conclusion: YA survivors have needs that are often addressed by their families, peers, and the health care system. However, barriers such as complex relationship history and lack of targeted/tailored support programs can prevent survivors from receiving adequate support. The growing diversity and intersectionality represented in the YA population call for targeted support and training by the health care system to sufficiently support this population.

The longitudinal course of emotional and cognitive factors of fear of cancer recurrence in breast cancer patients and their partners.

OBJECTIVE: Although fear of cancer recurrence (FCR) has been conceptualized as a multidimensional construct with emotional and cognitive components, little work has distinguished or assessed both components. Further, most existing research has not included intimate partners of cancer patients, although they also experience FCR. This study aimed to (1) determine whether FCR is better conceptualized as a singular or multidimensional construct at the within-person level over time and (2) model the corresponding trajectories in patients and their partners. METHODS: Female early stage breast cancer patients and their partners (N = 78 couples) completed up to five assessments over the first year post-diagnosis tapping both emotional and cognitive elements of FCR. Multilevel confirmatory factor analysis was used to evaluate FCR's factor structure, and multivariate latent growth curve modeling was used to estimate trajectories of emotional and cognitive FCR. RESULTS: FCR was best conceptualized as two distinct but related emotional and cognitive factors. In patients and partners, emotional FCR decreased over the first year post-diagnosis on average, while cognitive FCR did not change over time. CONCLUSIONS: Findings support the conceptualization of FCR as a multidimensional construct and underscore the potential importance of distinguishing emotional and cognitive components of FCR in future research.

Impact of Relationship and Communication Variables on Ambulatory Blood Pressure in Advanced Cancer Caregivers.

BACKGROUND: Cancer impacts both patients and their family caregivers. Evidence suggests that caregiving stress, including the strain of taking on a new role, can elevate the risk of numerous health conditions, including high blood pressure (BP). However, the caregiver's psychosocial experiences, including their interpersonal relationship with the patient, may buffer some of the negative physiological consequences of caregiving. PURPOSE: To examine the influence of psychosocial contextual variables on caregiver ambulatory BP. METHODS: Participants were 81 spouse-caregivers of patients with advanced gastrointestinal or thoracic cancer. For an entire day at home with the patient, caregivers wore an ambulatory BP monitor that took readings at random intervals. Immediately after each BP reading, caregivers reported on physical circumstances (e.g., posture, activity) and psychosocial experiences since the last BP measurement, including affect, caregiver and patient disclosure, and role perceptions (i.e., feeling more like a spouse vs. caregiver). Multilevel modeling was used to examine concurrent and lagged effects of psychosocial variables on systolic and diastolic BP, controlling for momentary posture, activity, negative affect, and time. RESULTS: Feeling more like a caregiver (vs. spouse) was associated with lower systolic BP at the same time point. Patient disclosure to the caregiver since the previous BP reading was associated with higher diastolic BP. No lagged effects were statistically significant. CONCLUSIONS: Caregivers' psychosocial experiences can have immediate physiological effects. Future research should examine possible cognitive and behavioral mechanisms of these effects, as well as longer-term effects of caregiver role perceptions and patient disclosure on caregiver psychological and physical health.

Multiple approaches to enhancing cancer communication in the next decade: translating research into practice and policy.

Communicating risk and other health information in a clear, understandable, and actionable manner is critical for the prevention and control of cancer, as well as the care of affected individuals and their family members. However, the swift pace of development in communication technologies has dramatically changed the health communication landscape. This digital era presents new opportunities and challenges for cancer communication research and its impact on practice and policy. In this article, we examine the science of health communication focused on cancer and highlight important areas of research for the coming decade. Specifically, we discuss three domains in which cancer communication may occur: (a) among patients and their healthcare providers; (b) within and among families and social networks; and (c) across communities, populations, and the public more broadly. We underscore findings from the prior decade of cancer communication research, provide illustrative examples of future directions for cancer communication science, and conclude with considerations for diverse populations. Health informatics studies will be necessary to fully understand the growing and complex communication settings related to cancer: such works have the potential to change the face of information exchanges about cancer and elevate our collective discourse about this area as newer clinical and public health priorities emerge. Researchers from a wide array of specialties are interested in examining and improving cancer communication. These interdisciplinary perspectives can rapidly advance and help translate findings of cancer communication in the field of behavioral medicine.

Psychosocial Impact of Cancer Care Disruptions in Women With Breast Cancer During the COVID-19 Pandemic.

Background: The COVID-19 pandemic caused significant disruptions in cancer care, and preliminary research suggests that these disruptions are associated with increased levels of psychosocial distress among cancer survivors. The purpose of this study was to offer a descriptive report of the psychosocial functioning, perceived risk and fear of cancer progression, and COVID-19 pandemic impact and experiences in a unique, high-risk patient cohort: breast cancer survivors whose cancer treatment was delayed and/or changed due to the COVID-19 pandemic. Methods: This cross-sectional study included 50 women with dual carcinoma in situ, lobular carcinoma in situ, or invasive breast cancer whose cancer surgery was postponed due to the pandemic. As they awaited delayed surgery or shortly after they received delayed surgery, participants completed questionnaires on psychosocial functioning (depression, anxiety, sleep, and quality of life), their perceived risk and fear of cancer progression, patient-provider communication about disruptions in their care, personal impact of the pandemic, worry/threat about COVID-19, and COVID-19 symptoms/diagnoses. Descriptive statistics and bivariate correlations were computed among continuous study variables. Independent samples t-tests explored group differences in psychosocial functioning between survivors who were still awaiting delayed surgery and those who had recently received it. Results: Overall, the sample denied that the pandemic seriously negatively impacted their finances or resource access and reported low-to-moderate levels of psychosocial distress and fear about COVID-19. Twenty-six percent had clinically significant levels of fear of cancer progression, with levels comparable to other recent work. About a third were still awaiting delayed cancer surgery and this group reported lower satisfaction with communication from oncology providers but overall did not seem to report more psychosocial difficulties than those who already had surgery. Conclusion: Shortly before or after primary breast cancer surgery that was delayed due to the COVID-19 pandemic, this sample of survivors appears to be generally managing well psychosocially. However, many psychosocial difficulties (e.g., fear of cancer recurrence/progression) typically have an onset after the completion of treatment, therefore, research should continue to follow this cohort of cancer survivors as the pandemic's direct impact on their care likely increases their risk for these difficulties later in survivorship.

Using the health belief model to assess racial/ethnic disparities in cancer-related behaviors in an NCI-designated comprehensive cancer center catchment area.

BACKGROUND: Racial and ethnic minorities experience well-documented disparities across the cancer trajectory. However, factors underlying these disparities may vary regionally. The Health Belief Model (HBM) was developed to explain and predict health-related prevention and early detection behaviors, particularly uptake of health services. Our goal was to use the HBM to guide an exploration of factors that contribute to racial/ethnic health disparities in the catchment area of a large National Cancer Institute-designated Comprehensive Cancer Center in the Southeastern United States. METHODS: We conducted a secondary analysis of data collected by the cancer center for its triennial Community Health Needs Assessment, which sampled adults from the center's 15-county catchment area. White non-Hispanics (WNHs; n = 887), Black non-Hispanics (BNHs; n = 78), Hispanics/Latinxs (H/Ls; n = 185), and those identifying as another race/ethnicity ("Others"; n = 39) were compared across key HBM variables, including demographic/psychosocial information, perceived benefits and barriers to preventive health behaviors, risk perception, and health behavior outcomes. RESULTS: Controlling for annual household income, relationship status, and age (for certain screening behaviors), significant differences were seen in information-seeking behaviors, risk perception, community attributes, discrimination, and distress. Non-WNH groups reported worse community attributes, higher everyday discrimination, lower health literacy, less confidence in their ability to get health information, and lower perceived risk of cancer. CONCLUSION: This analysis presents a better understanding of how HBM factors may influence health disparities in the cancer center's catchment area. Results describe the needs of community members from racial and ethnic minority groups, which will inform future research, education, outreach, and service activities.

Quality of life in caregivers of patients receiving chimeric antigen receptor T-cell therapy.

OBJECTIVE: Informal family caregivers provide critical support for patients receiving chimeric antigen receptor (CAR) T-cell therapy. However, caregivers' experiences are largely unstudied. This study examined quality of life (QOL; physical functioning, pain, fatigue, anxiety, and depression), caregiving burden, and treatment-related distress in caregivers in the first 6 months after CAR T-cell therapy, when caregivers were expected to be most involved in providing care. Relationships between patients' clinical course and caregiver outcomes were also explored. METHODS: Caregivers completed measures examining QOL and burden before patients' CAR T-cell therapy and at days 90 and 180. Treatment-related distress was assessed at days 90 and 180. Patients' clinical variables were extracted from medical charts. Change in outcomes was assessed using means and 99% confidence intervals. Association of change in outcomes with patient clinical variables was assessed with backward elimination analysis. RESULTS: A total of 99 caregivers (mean age 59, 73% female) provided data. Regarding QOL, pain was significantly higher than population norms at baseline but improved by day 180 (p < .01). Conversely, anxiety worsened over time (p < .01). Caregiver burden and treatment-related distress did not change over time. Worsening caregiver depression by day 180 was associated with lower patient baseline performance status (p < .01). Worse caregiver treatment-related distress at day 180 was associated with lower performance status, intensive care unit admission, and lack of disease response at day 90 (ps < 0.01). CONCLUSIONS: Some CAR T-cell therapy caregivers experience pain, anxiety, and burden, which may be associated patients' health status. Further research is warranted regarding the experience of CAR T-cell therapy caregivers.

The Florida Pancreas Collaborative Next-Generation Biobank: Infrastructure to Reduce Disparities and Improve Survival for a Diverse Cohort of Patients with Pancreatic Cancer.

Background: Well-annotated, high-quality biorepositories provide a valuable platform to support translational research. However, most biorepositories have poor representation of minority groups, limiting the ability to address health disparities. Methods: We describe the establishment of the Florida Pancreas Collaborative (FPC), the first state-wide prospective cohort study and biorepository designed to address the higher burden of pancreatic cancer (PaCa) in African Americans (AA) compared to Non-Hispanic Whites (NHW) and Hispanic/Latinx (H/L). We provide an overview of stakeholders; study eligibility and design; recruitment strategies; standard operating procedures to collect, process, store, and transfer biospecimens, medical images, and data; our cloud-based data management platform; and progress regarding recruitment and biobanking. Results: The FPC consists of multidisciplinary teams from fifteen Florida medical institutions. From March 2019 through August 2020, 350 patients were assessed for eligibility, 323 met inclusion/exclusion criteria, and 305 (94%) enrolled, including 228 NHW, 30 AA, and 47 H/L, with 94%, 100%, and 94% participation rates, respectively. A high percentage of participants have donated blood (87%), pancreatic tumor tissue (41%), computed tomography scans (76%), and questionnaires (62%). Conclusions: This biorepository addresses a critical gap in PaCa research and has potential to advance translational studies intended to minimize disparities and reduce PaCa-related morbidity and mortality.

Impact of Patients' Companions on Clinical Encounters Between Black Patients and Their Non-Black Oncologists.

PURPOSE: The presence of caregivers or companions during clinical encounters influences the dynamics and outcomes of the encounters. Most prior studies of companions in clinical encounters focus on non-Hispanic White patients. However, there is generally lower-quality patient-physician communication during encounters with Black patients; these communication differences may contribute to racial health disparities. The purpose of the present study was to examine effects of the presence and active participation of companions on encounters between Black patients with cancer and non-Black oncologists. METHODS: This was a secondary analysis of data collected during a larger intervention study. Participants were Black patients with breast, colon, or lung cancer who had a treatment-discussion encounter with a participating non-Black medical oncologist. Video recordings of encounters were coded for patient, companion, and oncologist communication. After the encounter, patients reported perceptions of the recommended treatment; patients and oncologists reported perceptions of each other. RESULTS: Data from 114 patients and 19 oncologists were included in analyses. Only 47% of patients brought a companion to the encounter. Oncologists spent more time with accompanied Black patients, used more patient-centered communication with them, and perceived them as having more social support compared with unaccompanied Black patients. Oncologists reported that accompanied patients asked more questions. When companions participated more actively in the encounter, oncologists used more patient-centered communication. DISCUSSION: Bringing a companion to oncology appointments may be beneficial to Black patients because oncologists spend more time with patients, use more patient-centered communication, and perceive patients more positively, all of which may ultimately improve patient health and well-being outcomes.