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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 p’s 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

PURPOSE: Allogeneic hematopoietic stem cell transplantation (Allo-HSCT) is a demanding treatment that requires caregiver support during the first 100 days post-transplant. Little is known about the association between caregivers’ employment changes and their well-being during this lengthy and challenging time when caregivers may be balancing work with caregiving responsibilities. METHODS: We used data from employed caregivers of Allo-HSCT patients who participated in two randomized clinical trials (N = 187) of an intervention for caregivers. Caregiver depression and anxiety were assessed using the Center for Epidemiologic Studies Depression and the Spielberger State-Trait Anxiety Inventory. ANCOVA was used to measure the associations between reducing work with depression and anxiety. Caregiver’s demographics and baseline employment status were controlled in the analysis along with the patient’s transplant conditioning intensity. RESULTS: Approximately 45% of caregivers reduced hours worked following the resumption of their caregiving duties. These caregivers, on average, had 3.49 points higher depression scores than caregivers who did not report a reduction in work (p < 0.01). Similarly, these caregivers also reported, on average, 3.56 higher anxiety scores (p < 0.10). CONCLUSIONS: Caregivers who reduced hours worked while caregiving reported greater distress. The underlying cause of this distress deserves further investigation. IMPLICATIONS FOR CANCER SURVIVORS: Caregivers of patients diagnosed with cancer may experience considerable stress related to work discontinuation and caregiving. Interventions are needed to support caregivers who are trying to balance work and caregiving responsibilities.

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 (ΔR(2) = 0.04, p = 0.002), sleep efficiency (ΔR(2) = 0.03, p = 0.02), and sleep onset latency (ΔR(2) = 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 (ΔR(2) = 0.02, p = 0.01) and sleep onset latency (ΔR(2) = 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.

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.

Sex differences in non-epileptic seizures (NES) are of interest, as the diagnosis is more frequent in women than men (3:1 ratio). This paper reviews clinical findings regarding sex differences in NES through selective literature review and compares coping measures between women and men in our NES clinic. Some distinguishing clinical features of NES in women and men are reported in the literature. However, we found few sex differences in demographics and coping. In our population, avoidance and dissociation were strongly related to one another and significantly related to co-occurring PTSD diagnosis, which was seen in over 50% in both sexes. Our findings confirm a high prevalence of PTSD in patients with NES, suggesting that comorbid PTSD may override sex differences in accounting for use of avoidant and dissociative coping. These findings raise the possibility that NES may, at times, represent an extreme variant in dysfunctional coping in patients with PTSD.

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 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.

Few studies have addressed whether stress-associated physiological changes in caregivers are reversible by psychological interventions mitigating distress. We report on pro-inflammatory, sympathetic, and oxidative stress gene expression in response to stress management for caregivers of allogeneic hematopoietic stem cell transplant (Allo-HSCT) patients. Following randomization by permuted block to either treatment as usual (TAU, n = 11) or a stress management intervention (PsychoEducation, Paced Respiration, and Relaxation, PEPRR, n = 13), twenty-four caregivers were selected at the conclusion of a larger trial of 149 caregivers. PEPRR was provided one-on-one beginning around transplant. Genome-wide transcriptional profiling was conducted on peripheral blood mononuclear cells collected prior to randomization and on completion of PEPRR 3 months post-transplant. Bioinformatics analysis of differentially expressed genes indicated reduced activity of transcription control pathways associated with inflammation (NF-κB), sympathetic nervous system (CREB), and oxidative stress (NRF2) in caregivers receiving PEPRR compared to TAU aligning with reductions in stress, depression, and anxiety. This suggests that PEPRR may alter transcriptomic effects reported for distressed individuals.

Caregivers of patients receiving allogeneic hematopoietic stem cell transplants (allo-HSCT) serve a pivotal role in patient care but experience high stress, anxiety and depression as a result. We theorized that stress management adapted for allo-HSCT caregivers would reduce distress compared with treatment as usual (TAU). Of 267 consecutive caregivers of allo-HSCT patients approached, 148 (mean=53.5 years, 75.7% female) were randomized to either psychosocial intervention (i=74) or TAU (n=74). Eight one-on-one stress management sessions delivered across the 100-day post-transplant period focused on understanding stress, changing role(s) as caregiver, cognitive behavioral stress management, pacing respiration and identifying social support. Primary outcomes included perceived stress (psychological) and salivary cortisol awakening response (CAR) (physiological). Randomized groups were not statistically different at baseline. Mixed models analysis of covariance (intent-to-treat) showed that intervention was associated with significantly lower caregiver stress 3 months post transplant (mean=20.0, 95% confidence interval (95% CI)=17.9-22.0) compared with TAU (mean=23.0, 95% CI=21.0-25.0) with an effect size (ES) of 0.39 (P=0.039). Secondary psychological outcomes, including depression and anxiety, were significantly reduced with ESs of 0.46 and 0.66, respectively. Caregiver CAR did not differ from non-caregiving controls at baseline and was unchanged by intervention. Despite significant caregiving burden, this psychosocial intervention significantly mitigated distress in allo-HSCT caregivers.

Allogeneic stem cell transplantation is a common form of treatment for many types of blood cancers and requires active caregiver involvement for 100 days or longer [1]. The stress of caregiving starts before transplantation when families are preparing for the adversities of the transplant process. Caregivers are often involved in patients’ treatment prior to transplantation since most caregivers are patients’ immediate family members. As the start of transplant nears, the realities of the decision to proceed to transplant and associated risks for morbidity and mortality become increasingly concrete to the patient and caregiver. Although there is potential for significant improvement in the patients’ disease status following transplant, there remains a high level of risk with the transplant procedure. Understanding caregiver adjustment to these peri-transplant stressors is important to identify support needs and develop interventions to help caregivers meet the caregiving challenge. Caregivers of cancer patients face considerable risk regarding their own well-being. The burden of caregiving can have a significant impact on emotional, physical and social functioning [2-7], as well as immune and neuroendocrine processes [8, 9]. The patient and caregiver are closely connected in their experiences of dealing with the cancer; patient physical and psychological well-being is related to caregiver emotional and psychological well-being [10, 11]. From a systems perspective, this relationship would be bidirectional. Thus, caring for the caregiver is important for the health of the caregiver as well as the health of the patient. Despite the critical role of caregivers, only limited research has focused on the caregiver experience and even fewer studies have focused on the caregiver during the allogeneic peri-transplant period. When allogeneic transplant patients and caregivers (n=40 and n=39, respectively) were compared on their pre-transplant psychosocial and psychological functioning, patients and caregivers reported significant distress prior to transplant [12]. Relatives of autologous and allogeneic transplant recipients reported stress significantly above the norm on the General Health Questionnaire, with stress greatest before and immediately following transplant [10]. Caregivers experienced greater anxiety and depression prior to transplant than five and 20 days post-transplant [13]. In a large study of autologous transplant caregivers (n=102), caregivers reported low levels of fatigue yet moderate levels of anxiety prior to transplant compared to population norms [14]. These studies suggest distress experienced by transplant caregivers is especially acute in the period preceding and immediately following transplantation of stem cells, i.e., the peri-transplant period. However, studies are limited by small sample sizes, restrictions in outcomes assessed, and heterogeneous patient groups consisting of both autologous and allogeneic transplant recipients or only autologous patient groups who present different caregiver challenges than allogeneic caregivers. The purpose of this study was to describe the peri-transplant psychological status in a sample of caregivers of allogeneic transplant patients using measures of mood, perceived stress, sleep, and caregiving burden while determining if demographic or patient illness characteristics prior to transplant predicted levels of caregiver distress. We predicted that caregiver sex, age and patient status would contribute to overall peri-transplant caregiver distress. We hypothesized that female caregivers and younger caregivers would experience more distress than male or older caregivers.

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 (β = .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 (β values = -.34 and .29, respectively; P values < .05). Caregiver distress was unrelated to engraftment (β = .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.

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 (β = 0.25, p = .009), whereas poorer sleep did not reach significance (β = 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.

Caregivers are known to experience increased morbidity when compared to noncaregivers. Does an intervention targeting caregiver distress affect their health care utilization? One hundred forty-eight caregivers of allogeneic hematopoietic stem cell transplant patients were randomized to treatment as usual (TAU) or a psychoeducation, paced respiration, and relaxation (PEPRR) intervention. Assessments of caregivers' service utilization were collected at baseline and 1, 3, and 6 months post-transplant. During the first 30 days after patient transplant, caregiver medical and mental health professional service use decreased while support group attendance peaked. Mixed model regressions showed a significant decrease in mental health service use by the PEPRR group (P=0.001). At six months caregivers in TAU had predicted marginal probabilities of mental health services utilization over 10 times as high as caregivers in PEPRR (18.1% vs 1.5%). Groups failed to differ in medical service (P=0.861) or support group (P=0.067) use. We can conclude that participation in PEPRR compared to TAU was associated with reduced mental health service utilization. Caregiver psychosocial support services are critical to improve caregiver outcomes.

Caregiving for hematopoietic stem cell transplant patients (HSCTp) is burdensome resulting in inadequate self-care, possibly leading to negative patient outcome. This potential Caregiver–HSCTp relationship was examined through assessment of caregiver objective and subjective sleep measures. We hypothesized that better caregiver sleep would be related to shorter time to patient engraftment (TtoE). Dyads ( N = 109) were HSCTp (M (SD) age = 48.2(12.7)) and caregivers (M (SD) age = 52.7(12.6)). Linear regression controlled for clinically relevant patient variables (age, sex, pre-transplant treatment intensity, clinical status). Better caregiver subjective sleep quality (Pittsburgh Sleep Quality Index) and objective sleep efficiency (SE; actigraphy) collected prior to engraftment significantly predicted TtoE (std beta’s = .20 and −.30 respectively; p ’s p R squared = 24%). Further, the timespan of sleep assessment relative to engraftment (M (SD) days = 18.5(12.1)) was controlled for to address the potential bidirectional relationship (e.g., shorter TtoE led to better caregiver sleep), and significant effects of caregiver SE remained (std beta = −.18; p (Supported by NIH grant CA126971 and PCORI contract CE-1304-6208.)

Caregiving represents a significant stressor affecting both behavioral and physiological regulation including increased inflammatory markers. At what time does caregiving begin to impact physiological and behavioral systems? As part of a randomized intervention for caregiver distress, we compared caregivers of blood or marrow transplant (BMT) recipients around the time of transplantation (baseline) to non-caregiving controls, with regard to plasma inflammatory markers (CRP and IL-6), blood pressure, BMI, natural cytotoxicity, and diurnal salivary cortisol. Female caregivers ( n = 51, age 50.6) were compared to female non-caregivers ( n = 19, age 47.9). Caregivers spent 10.7 h/day caring for the patient at baseline. Patients were diagnosed a median 18 months prior to transplant. Subjects completed the Perceived Stress Scale (PSS), Center for Epidemiological Studies-Depression scale (CESD), and Spielberger State Anxiety Inventory (STAI). Blood samples were assessed for inflammatory markers (CRP, IL6) by EIA. Lysis of K562 tumors indicating natural cytotoxicity was reported as lytic units/NK+ cell. At baseline, caregivers were significantly elevated on the PSS, CESD and STAI compared to controls ( NIH Grant CA126971 .)