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.

NCCN Guidelines® Insights: Distress Management, Version 2.2023.

These NCCN Guidelines for Distress Management discuss the identification and treatment of psychosocial problems in patients with cancer. All patients experience some level of distress associated with a cancer diagnosis and the effects of the disease and its treatment regardless of the stage of disease. Clinically significant levels of distress occur in a subset of patients, and identification and treatment of distress are of utmost importance. The NCCN Distress Management Panel meets at least annually to review comments from reviewers within their institutions, examine relevant new data from publications and abstracts, and reevaluate and update their recommendations. These NCCN Guidelines Insights describe updates to the NCCN Distress Thermometer (DT) and Problem List, and to the treatment algorithms for patients with trauma- and stressor-related disorders.

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.

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.

Distress Management, Version 3.2019, NCCN Clinical Practice Guidelines in Oncology.

Distress is defined in the NCCN Guidelines for Distress Management as a multifactorial, unpleasant experience of a psychologic (ie, cognitive, behavioral, emotional), social, spiritual, and/or physical nature that may interfere with the ability to cope effectively with cancer, its physical symptoms, and its treatment. Early evaluation and screening for distress leads to early and timely management of psychologic distress, which in turn improves medical management. The panel for the Distress Management Guidelines recently added a new principles section including guidance on implementation of standards of psychosocial care for patients with cancer.

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.

Impact of a Mobilized Stress Management Program (Pep-Pal) for Caregivers of Oncology Patients: Mixed-Methods Study.

BACKGROUND: Caregivers of patients with advanced diseases are known to have high levels of distress, including depression and anxiety. Recent research has focused on recognizing caregivers in need of psychosocial support to help them manage their distress. Evidenced-based technological interventions have the potential to aid caregivers in managing distress. OBJECTIVE: The objective of our study was to describe caregiver perceptions of the usability and acceptability, and their suggestions for future adaptations, of a mobilized psychoeducation and skills-based intervention. METHODS: This study was a part of a larger trial of a mobilized psychoeducation and skills-based intervention (Psychoeducation and Skills-Based Mobilized Intervention [Pep-Pal]) for caregivers of patients with advanced illness. This substudy used a mixed-methods analysis of quantitative data from all 26 intervention participants and qualitative data from 14 intervention caregivers who completed the Pep-Pal intervention. The qualitative semistructured individual interviews, which we conducted within the first 4 weeks after participants completed the intervention, assessed the acceptability and usability of Pep-Pal. Additionally, the qualitative interviews provided contextual evidence of how the intervention was helpful to interviewees in unanticipated ways. We conducted applied thematic analysis via independent review of transcripts to extract salient themes. RESULTS: Overall, caregivers of patients with advanced cancer deemed Pep-Pal to be acceptable in all Web-based sessions except for Improving Intimacy. Caregivers perceived the program to be of use across the areas they needed and in others that they had not anticipated. Caregiver recommendations of key changes for the program were to include more variety in caregiver actors in sessions, change the title of Improving Intimacy to Improving Relationships, provide an audio-only option in addition to video, and change the format of the mobilized website program to a stand-alone mobile app. CONCLUSIONS: The valuable feedback in key areas from individual interviews will be integrated into the final version of Pep-Pal that will be tested in a fully powered randomized clinical trial. TRIAL REGISTRATION: ClinicalTrials.gov NCT03002896; https://clinicaltrials.gov/ct2/show/NCT03002896 (Archived by WebCite at http://www.webcitation.org/76eThwaei).

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.

Demoralization in medical illness: Feasibility and acceptability of a pilot educational intervention for inpatient oncology nurses.

ABSTRACTObjective:Demoralization is a common problem among medical inpatients with such serious health problems as cancer. An awareness of this syndrome, a knowledge of what defines it, and a plan for how to intervene are limited among nursing teams. Nurses are uniquely poised to efficiently provide brief interventions that address demoralization in their patients. To our knowledge, there are no interventions that train nurses to distinguish and treat demoralization in their patients. The objective of the present study was to determine the acceptability, feasibility, and impact of a novel educational intervention for nurses. METHOD: An educational training video was created and delivered to staff nurses (N = 31) at oncology staff meetings to test the feasibility and acceptability of this intervention. Assessments of nurses' knowledge about demoralization and intervention methods were administered immediately before and after the training intervention and through a web-based survey 6 weeks post-intervention. McNemar's test for dependent categorical data was utilized to evaluate change in survey responses at the three timepoints. RESULTS: Nurses' understanding of the concept of demoralization and appropriate interventions significantly improved by 30.3% from pre- to posttest (p ≤ 0.0001). These improvements persisted at 6 weeks post-intervention (p ≤ 0.0001). At 6-week follow-up, 74.2% of participants agreed or strongly agreed that the training had positively changed their nursing practice, 96.8% reported that this training benefited their patients, and 100% felt that this training was important for the professional development of nurses. SIGNIFICANCE OF RESULTS: This pilot intervention appeared feasible and acceptable to nurses and resulted in increased understanding of demoralization, improved confidence to intervene in such cases, and an enhanced sense of professional satisfaction among inpatient oncology floor nurses.

Caregiver Sleep and Patient Neutrophil Engraftment in Allogeneic Hematopoietic Stem Cell Transplant: A Secondary Analysis.

BACKGROUND: Caregiving for allogeneic hematopoietic stem cell transplant (Allo-HSCT) patients can be significantly burdensome. Caregiver well-being often mirrors patients' suffering. However, to our knowledge, this dyadic relationship has not been linked to patient outcome. OBJECTIVE: Caregiver's objective and subjective sleep and overall distress before transplantation were hypothesized to be related to patient's time to engraftment in secondary analyses. METHODS: Dyads (N = 124) were Allo-HSCT patients (mean [SD] age, 49.2 [12.7] years) and their caregivers (mean [SD] age, 52.7 [12.3] years). Caregiver's subjective sleep quality was measured via the Pittsburgh Sleep Quality Index, objective sleep was measured by actigraphy, and distress was measured by combining validated psychological measures. RESULTS: Both caregiver reports of worse sleep (ß = .22; P < .05) and objective measurement of caregiver sleep patterns (higher sleep efficiency; less time awake after sleep onset) collected before engraftment significantly predicted shorter time to patient engraftment (ß values = -.34 and .29, respectively; P values < .05). Caregiver distress was unrelated to engraftment (ß = .14; P = .22). CONCLUSIONS: Despite limitations in available patient data, these findings appear to link caregiver well-being to patient outcome. This underscores the interrelatedness of the patient-caregiver dyad in Allo-HSCT. Future research should examine psychological and biomedical mediators. IMPLICATIONS FOR PRACTICE: Given that caregiver well-being during the peritransplantation period was associated with patient outcome in this study, such findings highlight the need to address caregiver and patient well-being during Allo-HSCT. There may be potential to improve patient outcome by focusing on the caregiver, which nursing staff is well positioned to monitor.