Developing a national implementation strategy to accelerate uptake of evidence-based family caregiver support in U.S. cancer centers.

OBJECTIVE: Characterize key factors and training needs of U.S. cancer centers in implementing family caregiver support services. METHODS: Sequential explanatory mixed methods design consisting of: (1) a national survey of clinicians and administrators from Commission-on-Cancer-accredited cancer centers (N = 238) on factors and training needed for establishing new caregiver programs and (2) qualitative interviews with a subsample of survey respondents (N = 30) to elicit feedback on survey findings and the outline of an implementation strategy to facilitate implementation of evidence-based family caregiver support (the Caregiver Support Accelerator). Survey data was tabulated using descriptive statistics and transcribed interviews were analyzed using thematic analysis. RESULTS: Top factors for developing new caregiver programs were that the program be: consistent with the cancer center's mission and strategic plan (87%), supported by clinic leadership (86.5%) and providers and staff (85.7%), and low cost or cost effective (84.9%). Top training needs were how to: train staff to implement programs (72.3%), obtain program materials (63.0%), and evaluate program outcomes (62.6%). Only 3.8% reported that no training was needed. Qualitative interviews yielded four main themes: (1) gaining leadership, clinician, and staff buy-in and support is essential; (2) cost and clinician burden are major factors to program implementation; (3) training should help with adapting and marketing programs to local context and culture; and (4) the Accelerator strategy is comprehensive and would benefit from key organizational partnerships and policy standards. CONCLUSION: Findings will be used to inform and refine the Accelerator implementation strategy to facilitate the adoption and growth of evidence-based cancer caregiver support in U.S. cancer centers.

Proxy ratings of psychological well-being in patients with primary brain tumors: A systematic review.

OBJECTIVE: This systematic review examined the agreement of proxy ratings of depression and anxiety in neuro-oncology patients. METHODS: Searches were conducted across 4 databases (MEDLINE, Embase, PsycINFO, CINAHL, and Web of Science) to identify studies that compared proxy ratings (non-health care providers) of anxiety and depression in patients with brain cancer. Methodological quality and potential risk of bias were evaluated using the Joanna Briggs Institute Critical Appraisal Checklist. RESULTS: Out of the 936 studies that were screened for inclusion, 6 were included for review. The findings were mixed in terms of whether patient and proxy ratings were accurate (e.g., deemed equivalent), with many of the selected studies suggesting moderate level of agreement for several of the selected studies and, when both depression and anxiety were included, depression ratings from proxy raters were more accurate than for anxiety. We identified important limitations across the selected articles, such as low sample size, clarity on defining proxy raters and the different instructions that proxy raters are given when asked to assess patients' mood symptoms. CONCLUSIONS: Our findings suggest that proxy ratings of depression and anxiety should be interpreted with caution. While there is some agreement in proxy and patients with brain cancer ratings of depression and anxiety (greater agreement for depression), future work should recruit larger samples, while also remaining mindful of defining proxy raters and the instructions given in collecting these ratings.

Exploring anxiety as an influencing factor of the impact of exercise and mind-body prehabilitation on cognitive functioning among women undergoing breast cancer surgery.

OBJECTIVE: The purpose of this secondary analysis was to describe the prevalence of anxiety, depression, and perceived stress among women newly diagnosed with breast cancer and the impact of baseline and changes in anxiety on cognitive functioning following exercise and mind-body prehabilitation interventions. METHODS: The sample consisted of 49 women with newly diagnosed breast cancer (stages I-III) who planned to undergo breast cancer surgery at two academic cancer centers. Participants were randomized to receive an exercise or mind-body prehabilitation intervention between the time of diagnosis and breast cancer surgery. Participants completed self-report measures of anxiety, depression (HADS), perceived stress, and cognitive functioning (EORTC-QLQ-C30) at study enrollment and prior to surgery (post-intervention). The relationships between change in cognitive functioning and change in anxiety among all participants were estimated using linear regression modeling. RESULTS: A significant proportion of women with newly diagnosed breast cancer had clinically significant anxiety (34.0%). Greater anxiety was moderately associated with worse cognitive functioning (r = -0.33) at baseline. Linear modeling found that changes in cognitive functioning and anxiety were inversely related: Each one-unit decrease in anxiety was associated with a two-unit improvement in cognitive function (p = .06). CONCLUSIONS: Anxiety was common in women with newly diagnosed breast cancer and was related to worse cognitive functioning. Assessment of anxiety at the time of diagnosis may allow for earlier anxiety management and subsequent improvement in cognitive functioning.

Impact of the COVID-19 pandemic on cancer patients and psycho-oncology providers: Perspectives, observations, and experiences of the American Psychosocial Oncology Society membership.

OBJECTIVE: To understand: (1) psycho-oncology providers' perspectives on and observations of the psychological responses of their cancer patients during the pandemic, and (2) psycho-oncology providers' own experiences delivering care. METHODS: In this concurrent mixed methods study, a survey was distributed to psychosocial providers who were members of the American Psychosocial Oncology Society (APOS). Survey respondents were invited to participate in a one-on-one audio-recorded interview via phone or secure Zoom®. RESULTS: seventy-six self-identified psycho-oncology providers responded to the survey and 11 participated in a one-on-one interview. Approximately half reported that patients responded in unique ways to COVID-19 stress relative to other populations. Three themes emerged from qualitative analyses: (1) unique burden on patients, (2) cancer patients' pandemic response and its relationship to their cancer experience, and (3) unexpected positive changes. Providers emphasized that the cancer experience may have prepared patients for the existential distress of the pandemic and described patients' resiliency. Two themes emerged regarding delivery of care: (1) new professional and personal challenges and (2) provider resiliency. CONCLUSIONS: Although providers observed that the pandemic placed new burdens on patients, they emphasized that the cancer experience may have prepared patients for the existential distress of the pandemic and described patients' resiliency. To overcome challenges, psycho-oncology providers used innovative strategies to support patients and foster their own mental health.

More often than not, we're in sync: patient and caregiver well-being over time in stem cell transplantation.

BACKGROUND: Hematopoietic stem cell transplantation (HSCT) is an aggressive medical procedure which significantly impacts the shared emotional well-being of patients and family caregivers (FC). Prior work has highlighted the significant overlap in well-being among patients and FCs; however, how this interdependence may change over the course of HSCT has received less attention. METHODS: We conducted secondary analyses of a supportive intervention delivered to 154 FCs of HSCT patients and examined relationships at baseline, 6 weeks, 3 and 6 months post-HSCT. Actor Partner Interdependence Modeling examined patient quality of life (QOL) and FC anxiety/depression. RESULTS: The data did not fit a multigroup approach limiting our ability to test intervention effects; however, bivariate analyses indicated FC depression significantly correlated to patient QOL at baseline (r = - .32), 6 weeks (r = - .22) and 6 months post-HSCT (r = - .34; p's < .05); whereas FC anxiety was only correlated with patient QOL at the first two timepoints (p's < .05). There was an unexpected, partner effect such that worse patient QOL at 6-weeks significantly related to lower FC depression at 3-months (B = .193; p = .026) and changed direction with patient QOL at 3-months being related to more FC depression at 6-months (B = - .187; p = .001). CONCLUSIONS: These findings highlight the significant, yet nuanced, interdependence of patient QOL and FC well-being during HSCT. Specifically, greater interdependence was observed between patient QOL and FC depression compared to FC anxiety, suggesting potential treatment targets for patients and their families. Trial was registered at ClinicalTrials.gov Identifier: NCT02037568; first registered: January 16, 2014; https://clinicaltrials.gov/ct2/show/NCT02037568.

Exploring the impact of exercise and mind-body prehabilitation interventions on physical and psychological outcomes in women undergoing breast cancer surgery.

PURPOSE: To compare the impact of exercise and mind-body prehabilitation interventions on changes in quality of life and cancer treatment-related symptoms in women with newly diagnosed breast cancer. METHODS: The following describes a secondary analysis of a randomized window of opportunity trial (The Pre-Operative Health and Body Study). Forty-nine women were randomized to participate in either an exercise prehabilitation intervention or a mind-body prehabilitation intervention from the time of enrollment to surgery. Participants (N = 47) completed measures of quality of life, anxiety, depression, and stress at the time of enrollment (T1), post-intervention/surgery (T2), and one-month post-surgery (T3). Changes in outcome measures between groups were compared over time using longitudinal models. RESULTS: Mind-body group participants experienced significant improvements in cognitive functioning in comparison to exercise group participants between T1 and T3 (difference in average change: -9.61, p = 0.04, d = 0.31), otherwise, there were no significant differences between groups. Within group comparisons demonstrated that both groups experienced improvements in anxiety (exercise: average change = -1.18, p = 0.03, d = 0.34; mind-body: average change = -1.69, p = 0.006, d = 0.43) and stress (exercise: average change = -2.33, p = 0.04, d = 0.30; mind-body: average change = -2.59, p = 0.05, d = 0.29), while mind-body group participants experienced improvements in insomnia (average change = -10.03, p = 0.04, d = 0.30) and cognitive functioning (average change = 13.16, p = 0.0003, d = 0.67). CONCLUSIONS: Both prehabilitation interventions impacted cancer treatment-related symptoms. Further work in larger groups of patients is needed to evaluate the efficacy of prehabilitation interventions on quality of life in women with breast cancer. Pre-operative exercise and mind-body interventions may impact physical and/or psychological effects of cancer diagnosis and treatment in women with breast cancer. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT01516190. Registered January 24, 2012.

Check your sleep before you start: A secondary analysis of a stress management intervention for caregivers of stem cell transplant patients.

OBJECTIVE: Caregiving for hematopoietic stem cell transplant (HSCT) patients is associated with significant physical and psychological sequelae. While psychosocial interventions may reduce caregiver burden, knowledge regarding which caregivers may benefit the most from such interventions is limited. The purpose of this secondary analysis was to examine whether HSCT caregivers' peritransplant sleep moderated the effect of a psychosocial intervention on depression and anxiety posttransplant. METHODS: Participants included 135 caregivers (mean age = 54.23) who participated in randomized controlled trial and were assigned to receive either 8 weeks of Psychoeducation, Paced Respiration, and Relaxation (PEPRR) or treatment as usual (TAU). Sleep, depression, and anxiety were assessed using the Pittsburg Sleep Quality Index, the Center for Epidemiologic Studies Depression Scale, and the State-Trait Anxiety Inventory, respectively. Caregiver symptoms were assessed at baseline (e.g., peritransplant period) and 6-month posttransplant. RESULTS: Baseline sleep quality (∆R2  = 0.04, p = 0.002), sleep efficiency (∆R2  = 0.03, p = 0.02), and sleep onset latency (∆R2  = 0.07, p < 0.001) independently moderated the effect of group assignment on depression outcomes at the 6-month follow-up. Specifically, caregivers with poor sleep at baseline who received PEPRR reported significantly lower depression scores at follow-up compared to caregivers with poor sleep who received TAU. By contrast, only sleep quality (∆R2  = 0.02, p = 0.01) and sleep onset latency (∆R2  = 0.02, p = 0.005) moderated the effect of the group assignment on anxiety. CONCLUSIONS: Psychosocial interventions for HSCT caregivers may buffer against psychological morbidity, particularly among caregivers with poor sleep quality.

A pilot study of mobilized intervention to help caregivers of oncology patients manage distress.

OBJECTIVE: Caregivers of patients with advanced cancer experience significant anxiety, depression, and distress. Caregivers have barriers to accessing in-person treatment to manage stress. Technology allows for the dissemination of evidence-based interventions in a convenient way. This study examined usage rates of Pep-Pal (an evidence-based mobilized intervention to help caregivers of patients with advanced cancer manage distress) and estimates of efficacy on anxiety, depression, stress, and sexual dysfunction. METHODS: Fifty-six primary caregivers of patients with advanced cancer were recruited through oncology clinics and randomized to either Pep-Pal (a mobilized psychoeducation and skills-based intervention for caregivers, n = 26) or treatment as usual (TAU; n = 30). All were screened for moderate anxiety on the Hospital Anxiety and Depression Scale-Anxiety screening assessment (A ≥ 8) at baseline. RESULTS: Participants randomized to Pep-Pal experienced greater reductions in perceived stress (PSS; F = 3.91, p = .05), greater increases in ability to learn and use stress management skills (F = 6.16, p = 0.01), and greater increases in sexual function (women only; F = 5.07, p = 0.03) compared to participants in TAU. Of Pep-Pal participants, only 10 (38.5%) watched at least 7/9 full-length sessions. The a priori hypothesis and criterion that participants would watch at least 75% full-length sessions were not met. CONCLUSIONS: A brief, easily disseminated mobile intervention showed poor adherence, but had limited estimates of efficacy for secondary outcomes; perceived stress, learning stress management skills, and sexual functioning (women only). Future directions are discussed.

Identifying patient-level factors associated with interest in psychosocial services during cancer: A brief report.

OBJECTIVES: Uptake of psychosocial services during cancer treatment remains relatively low. To use these services efficiently, novel approaches - based on evidence-based theory - are needed to understand cancer patients' readiness to seek psychosocial services. Guided by the transtheoretical model (TTM), we investigated individuals' readiness to use psychosocial services by assessing decisional conflict (pros/cons) and self-efficacy, which are established as the most important constructs of predicting a specific behavior. METHODS: In these secondary analyses, we examined demographic and treatment-related factors in a national sample of adult cancer patients and survivors in the United States as predictors of decisional balance (pros/cons) and self-efficacy (i.e., two core TTM constructs) of engaging in psychosocial services. Participants were recruited through an online survey. In addition to examining demographic factors (age, sex, race, and marital status) as independent variables using t tests and correlations, treatment-related variables, such as having multiple cancers, type of cancer, type of treatment, and treatment setting were included. RESULTS: Four hundred and sixty-six participants completed the survey. The sample was primarily Caucasian (79%) and female (54.7%); average age was 47.9 (SD = 14.8). While no significant relationships emerged for self-efficacy, younger age and non-Caucasian race were significantly related to greater cons of seeking psychosocial care. Finally, those with multiple cancers versus reporting only one malignancy endorsed more cons of seeking psychosocial care. CONCLUSIONS: These data highlight the importance of measuring the cons of seeking psychosocial care during cancer treatment, with younger age, non-Caucasian, and those reporting experience with multiple cancers endorsing greater cons. This may impact eventual uptake of available services. Future research should identify individuals at risk for declining services based on perceived cons of seeking psychosocial care during cancer.

Associations Among Sleep Latency, Subjective Pain, and Thermal Pain Sensitivity in Gynecologic Cancer.

OBJECTIVE: Pain is common among women with gynecologic cancer and contributes to depressed mood, sleep disturbances, and likelihood of future chronic pain. Little is known about how psychosocial factors are associated with central sensitization of pain in gynecologic cancer. This study examined relations among depressive symptoms, sleep, subjective pain, and aftersensation pain (a proxy for central sensitization of pain) in gynecologic cancer. METHODS: Participants were 42 women (mean age [SD] = 59.60 [10.11] years) enrolled in a randomized clinical trial examining psychological intervention effects on sleep, pain, mood, and stress hormones/cytokines in gynecologic cancer. Six to eight weeks after surgery, participants completed an assessment of depressive symptoms, sleep, and subjective pain and a temporal summation of pain protocol via quantitative sensory testing (QST). RESULTS: Controlling for recent chemotherapy, history of chronic pain, and analgesic medication use, regression analyses revealed that longer sleep onset latency (SOL; B = 3.112, P = 0.039, bias-corrected and accelerated (BCa) 95% confidence interval [CI] = 0.371 to 6.014) and greater sensory pain (B = 0.695, P = 0.023, BCa 95% CI = 0.085 to 1.210) were associated with greater aftersensation pain at 15 seconds. Greater sensory pain scores were associated with greater aftersensation pain at 30 seconds (B = 0.286, P = 0.045, BCa 95% CI = 0.008 to 0.513). Depression was not associated with aftersensation pain. The overall models accounted for 44.5% and 40.4% of the variance in aftersensation pain at 15 and 30 seconds, respectively. Conclusions. Longer SOL and higher subjective sensory pain were related to greater aftersensation of experimentally induced pain in women postsurgery for gynecologic cancers. Interventions that improve sleep and subjective sensory pain during the perisurgical period may reduce risk for central sensitization of pain.

A randomized control trial of stress management for caregivers of stem cell transplant patients: Effect on patient quality of life and caregiver distress.

BACKGROUND: Psychological interventions reduce caregiver distress (CG-distress). Less distress in caregivers may contribute to improved patient quality of life (QoL), but empirical evidence is lacking. Will a caregiver stress management intervention improve patient QoL? METHODS: In this replication study, we randomized 155 allogeneic hematopoietic stem cell transplant (Allo-HSCT) patients and caregivers to PsychoEducation, Paced Respiration, and Relaxation (PEPRR) or enhanced treatment as usual (eTAU). We provided PEPRR over 3 months following transplant. Functional Assessment of Cancer Therapy-Bone Marrow Transplant (FACT-BMT) evaluated patient QoL, and CG-distress was based on depressive, anxious, and stress symptoms. Hierarchical linear models tested intervention, time, and interactions as fixed effects with participant as random effects. RESULTS: Patients whose caregivers received PEPRR did not differ on FACT-BMT between baseline and 6 months (mean = +3.74; 95% CI, -3.54 to 11.02) compared with patients of caregivers in eTAU (mean = +3.16; 95% CI, -2.88 to 9.20) even though CG-distress was decreased by PEPRR (mean = -0.23; 95% CI, -0.448 to -0.010) compared with those receiving eTAU (mean = +0.27; 95% CI, 0.033-0.504) at 6 months. CONCLUSIONS: PEPRR reduced CG-distress without affecting their patient's FACT-BMT score. The FACT-BMT may not have distinguished unique psychological changes associated with their caregiver receiving PEPRR.

Distress and quality of life in patient and caregiver dyads facing stem cell transplant: identifying overlap and unique contributions.

PURPOSE: Allogeneic hematopoietic stem cell transplantation (Allo-HSCT) is a demanding treatment requiring caregiver support. The pre-transplant period is particularly stressful. How patient and caregiver dyads respond to these stressors can impact post-transplant outcomes. The purpose of this cross-sectional study was to assess pre-transplant patient and caregiver distress, patient quality of life (pQoL), and simultaneously investigate relationship between caregiver distress, patient distress, and patient QoL. METHODS: We measured caregiver anxiety, depressive symptoms, perceived stress, sleep quality, caregiver burden, and pQoL in148 dyads compared to clinical thresholds or population norms. To reduce comparisons, we created a composite distress score from affective measures. Associations within dyads were examined via correlation and path analysis. RESULTS: Most dyads scored above norms for psychological measures. Patient distress was positively associated with caregiver distress. Higher caregiver distress significantly predicted poorer pQoL after accounting for the interdependence of patient and caregiver distress. Specifically, patients' physical functioning was the primary driver of this interrelationship. CONCLUSIONS: Allo-HSCT patients and their caregivers reported elevated distress pre-transplant. Both patient and caregiver distress contributed to pQoL, with patients' physical functioning accounting significantly for caregiver well-being. Supporting the patient-caregiver dyad before transplantation is a priority for supportive services.

Intraindividual Cortisol Variability and Psychological Functioning in Caregivers of Hematopoietic Stem Cell Transplant Patients.

OBJECTIVE: Caregiving for allogeneic hematopoietic stem cell transplant (Allo-HSCT) patients carries a significant psychological burden, yet it remains unclear whether Allo-HSCT caregivers demonstrate disruptions to stress systems, such as the hypothalamic-pituitary-adrenal axis. Greater intraindividual cortisol variability (ICV) has been observed in psychiatric disorders; however, there is a knowledge gap evaluating ICV in caregivers. We predicted that greater ICV would be related to poorer mental health in Allo-HSCT caregivers. METHODS: Allo-HSCT caregivers (n = 140) collected saliva for 3 consecutive days at 4 time points/d. Psychological variables included sleep quality and a summary composite score of overall mental health. RESULTS: Regression analyses demonstrated that greater ICV was significantly related to poorer overall mental health (ß = 0.25, p = .009), whereas poorer sleep did not reach significance (ß = 0.16, p = .069). No significant relationships emerged for the cortisol area under the curve, diurnal decline, or awakening response. CONCLUSIONS: Results extend prior work examining ICV as a unique marker that is possibly more sensitive than other widely applied measures of hypothalamic-pituitary-adrenal axis dysregulation to a distressed population of caregivers.

Cognitive Behavioral Stress Management for Healthy Women at Risk for Breast Cancer: a Novel Application of a Proven Intervention.

BACKGROUND: Women at risk for breast cancer report elevated psychological distress, which has been adversely associated with cancer-relevant behaviors and biology. PURPOSE: The present study sought to examine the effects of a 10-week cognitive behavioral stress management (CBSM) group intervention on distress among women with a family history of breast cancer. METHODS: Participants were randomly assigned to CBSM (N = 82) or a wait-list comparison group (N = 76). Baseline to postintervention effects of CBSM on depressive symptoms and perceived stress were examined using hierarchical regression. RESULTS: CBSM participants reported significantly lower posttreatment depressive symptoms (ß = -0.17, p < 0.05) and perceived stress (ß = -0.23, p < 0.05) than wait-list comparison participants. Additionally, greater relaxation practice predicted lower distress. CONCLUSIONS: Group-based CBSM intervention is feasible and can reduce psychological distress among women with a family history of breast cancer. The present findings represent an encouraging avenue for the future application of CBSM. ( Clinicaltrials.gov number NCT00121160).

So what I'm stressed? A qualitative study examininga caregivers' reactions to emerging biomarkers of stress.

Background: Caregivers of adults with cancer often report significant distress yet remain difficult to engage in supportive services. While the field of Psychosomatic Medicine has continued to identify important markers of physiologic stress, and demonstrated disruption in these markers in caregiver populations, no research has investigated whether biomarker information on caregivers' reaction to stress could impact their willingness to address their ongoing distress. Methods: Here, we report on a qualitative study (N = 17) in which we conducted individual interviews with cancer caregivers to explore their key attitudes towards, and subjective experience of, mock stress biomarker data. A total of 17 caregivers of patients (M age = 56.1 years; SD = 12.3) with primarily metastatic brain tumors (glioblastoma) were interviewed regarding four commercially available biomarkers (telomere length; hair cortisol, activity levels and heart rate variability). Once presented with information about stress biomarkers, caregivers were asked to discuss their subjective reaction as if it was their own data as well as their motivation and willingness to seek support after receiving such information. We identified and extracted relevant themes. Results: Analysis utilizing the framework method revealed four emerging themes. The first theme described caregivers' ability to manage stress and willingness to engage with supportive services. Second, caregivers generally accepted the biomarker data but preferred it to be presented in a specific way. The third theme demonstrated that for some, biomarker data may actually increase their subjective distress (e.g., whether or not something could be done to improve their mental state). The last theme described how biomarkers were generally received as meaningful motivators that could increase caregivers' willingness to engage with supportive services. Conclusions: In addition to the more general identified theme of CG's willingness to engage with additional support, we gained insights into caregivers' reaction to the stress biomarkers presented. Findings will set the stage for the utility of stress biomarker information and whether it influences cancer caregivers' willingness to address their distress and motivation to engage in supportive services.

Willingness toward psychosocial support during cancer treatment: a critical yet challenging construct in psychosocial care.

Psychosocial distress screening, mandated by the American College Surgeons' Commission on Cancer, continues to be implemented across cancer centers nationwide. Although measuring distress is critical to identifying patients who may benefit from additional support, several studies suggest that distress screening may not actually increase patients' utilization of psychosocial services. While various investigators have identified barriers that may impede effective implementation of distress screening, we posit that patients' intrinsic motivation, which we term patients' willingness, may be the biggest predictor for whether cancer patients choose to engage with psychosocial services. In this commentary, we define patient willingness towards psychosocial services as a novel construct, distinct from the intention toward a certain behavior described across pre-existing models of health behavior change. Further, we offer a critical perspective of models of intervention design that focus on acceptability and feasibility as preliminary outcomes thought to encompass the willingness construct described herein. Finally, we summarize several health service models that successfully integrate psychosocial services alongside routine oncology care. Overall, we present an innovative model that acknowledges barriers and facilitators and underscores the critical role of willingness in health behavior change. Consideration of patients' willingness toward psychosocial care will move the field of psychosocial oncology forward in clinical practice, policy initiatives, and study design.

This commentary focuses on individual motivation to pursue psychosocial support within the context of routine oncologic treatment. We term this novel idea as patients' willingness to pursue psychosocial treatment and review how this construct is discussed across various models of intervention design, health behavior change, and health delivery. We conclude that patients' willingness towards psychosocial support is one of the most important predictors to whether a patient with cancer may choose to engage with psychosocial services.

Psychosocial assessment practices for hematopoietic stem cell transplantation: a national survey study.

Psychosocial health predicts and contributes to medical outcomes for patients undergoing hematopoietic stem cell transplantation (HSCT). Yet, there are no standards for psychosocial assessments or support for both patients and caregivers across the care continuum. To examine the current state of psychosocial care, clinicians were sent a survey of their psychosocial assessment practices for patients and caregivers undergoing HSCT via the Listservs of professional organizations. Descriptive statistics and bivariate analyses were performed to summarize the findings. While 96% of participants reported routine pre-HSCT psychosocial assessment of patients, only 10.6% routinely used a validated transplant risk-assessment measure. Just 27% routinely performed follow-up psychosocial assessments. In contrast, only 47% of participants routinely assessed the psychosocial needs of family caregivers pre-HSCT, and 13% routinely performed follow-up assessments for caregivers. Most (90%) reported social workers were the primary providers of assessments. While patient-report measures were used for evaluation, the majority of assessments were clinical interviews. No significant differences were found between programs that treated adult and pediatric patients versus those only treating adult patients. Our findings highlight the lack of standard psychosocial practices for patients and family caregivers undergoing HSCT and we offer recommendations to fill this gap.

Caring for People We Know: An Unrecognized Risk for Burnout?

Background: As the field of palliative care continues to grow, many clinicians will care for patients with whom they have personal connections. Breaching the boundary between a clinician's personal and professional life is potentially an unrecognized risk for burnout. Objective: We explored the challenges of caring for patients personally known to clinicians and the types of support needed, with a view to developing preliminary practice guidelines. Design: Focus groups. Setting/Subjects: Thirteen psychosocial oncology and palliative care clinicians who care for adult patients participated in one of two focus groups. Six participants were physicians, four were nurse practitioner/registered nurse/physician assistant (NP/RN/PAs), and three were psychosocial clinicians. Measurement: Using NVivo 12, we analyzed focus group transcripts from clinicians about their experiences caring for patients they know personally, the impact of such experiences, and the type of support and guidelines that could benefit clinicians in these unique situations. Results: Navigating boundaries and managing the psychological impact on the clinician, including fear of negative evaluation, increased anxiety and emotional exhaustion were the most challenging aspects of providing such care. Suggested guidelines include an early team meeting, a buddy system, a conversation guide to address the dual relationship, and embedded psychological support and mentorship. Conclusions: Feedback from clinicians identified preliminary guidelines that incorporate tools palliative care teams can use to improve support for clinicians caring for patients with whom they have a personal connection. These tools address the psychosocial aspects of care and have the potential to help clinicians feel a greater sense of control in these often, challenging and emotionally taxing situations.

Study protocol for NeuroCARE: a randomised controlled trial of a psychological intervention for caregivers of patients with primary malignant brain tumours.

INTRODUCTION: Caregivers of patients with primary malignant brain tumours experience substantial psychological distress while caring for someone with a progressive, life-limiting neurological illness. However, there are few interventions aimed at addressing the psychosocial needs of this population. We developed and are testing a population-specific, evidence-based, telehealth intervention (NeuroCARE) to reduce anxiety symptoms and improve psychosocial functioning in this caregiver population. METHODS AND ANALYSIS: This study is a non-blinded, randomised controlled trial of a psychological intervention for caregivers of patients with primary malignant brain tumours receiving care at the Massachusetts General Hospital Cancer Center or Dana-Farber Cancer Institute. We will enrol 120 caregivers who screen positive for heightened anxiety. Participants will be randomised 1:1 to the NeuroCARE intervention or a usual care control condition. Caregivers assigned to NeuroCARE will complete six individual telehealth sessions with a trained behavioural health specialist over 12 weeks. Caregivers randomised to the control condition will receive usual care, including possible referral to social work or other appropriate resources. Participants will complete self-report questionnaires at baseline and 11 weeks and 16 weeks postrandomisation. The primary outcome is anxiety symptoms at 11 weeks among NeuroCARE participants, compared with usual care. Secondary outcomes include caregiver-reported depressive symptoms, quality of life, caregiver burden, caregiving self-efficacy, perceived coping skills and post-traumatic stress disorder symptoms. We also will explore potential mediators of the NeuroCARE effect on caregiver anxiety symptoms. ETHICS AND DISSEMINATION: The study is funded by a Career Development Award from Conquer Cancer, the American Society of Clinical Oncology Foundation (award number 2019CDA-7743456038) and approved by the Dana-Farber/Harvard Cancer Center Institutional Review Board (Protocol #19-250 V.10.1). The study will be reported in accordance with the Consolidated Standards of Reporting Trials statement for non-pharmacological trials. Results will be presented at scientific meetings and in peer-reviewed journals. TRIAL REGISTRATION NUMBER: NCT04109209.