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.
Internet-based mental health care is an area of growing interest for providers, but few studies have evaluated its efficacy in patients with cancer, and even fewer in young adults with cancer. Incorporating technological advances into clinical practice will increase access to care, reduce geographic health disparities, and provide more consistent services.
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 pretransplant. 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.
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.
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.
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