Caregiver Distress and Burden and Patient Distress Across the Outpatient Peri-Allogenic Bone Marrow Transplantation Period

Abstract

Background: Outpatient allogenic bone marrow transplants (alloBMT) are feasible due to improved vigilance and decreased transplant-related toxicities. The outpatient setting compels caregivers to fulfill non-physician roles. Few studies have examined the relationship between caregiver distress and burden and how they are manifested in the context of outpatient alloBMT; there is also scarce information on how distress manifests itself within the patient/caregiver dyad when faced with a life-threatening treatment. Purpose: Aim 1 examined the trajectory and association of caregiver distress and burden, and the movement of caregivers between caregiving states longitudinally. Aim 2 examined the distress trajectory of patients and caregivers, and assessed how they moved between low/high distressed states both individually and as a dyad. Aim 3 explored the possible association between absolute neutrophil count (ANC) and patient distress. Methods: This observational longitudinal repeated-measures study recruited patients and caregivers undergoing outpatient alloBMT. Surveys were administered at 3 time-points: infusion of donated bone marrow (T0), ANC recovery (T1), and discharge (T2). Caregivers were asked to respond to distress and burden questions using the Distress Thermometer (DT) and Caregiver Burden Scale, which measured objective and subjective demand, and subjective stress burden. Patients completed the DT surveys. ANC values for patients were extracted through medical chart review at the same time surveys were completed. Results: Caregiver distress and subjective stress burden were associated at all time points. Increase in burden leads to increase in distress. For patients and caregivers, distress was the highest at baseline and improved over time. As a dyad, the transition between high/low distressed states was ever-changing, demonstrating the dynamic nature of the alloBMT process. No significant differences were found in the distress scores of patients and caregivers, but there was a difference in distress scores along the alloBMT period, suggesting a temporal effect. ANC and patient symptomology were not consistently associated with patient distress. Conclusion: Caregiver distress and burden are related throughout the duration of the alloBMT period. As the dyad moves through the alloBMT period, they display the mutuality of distress, influencing each other as they face this difficult but life-saving journey together.