Self-management reflects a patient?s capacity to manage medical conditions, emotions, and social roles. Due to diminished (or fluctuating) capacity secondary to severe chronic illness, and its resultant complex medical care, patients awaiting thoracic transplantation rely on lay caregivers to enhance self-management. In fact, the caregiver is so important that a patient without an identified caregiver will not be listed for transplant. Caregiver traits and behaviors are associated with both transplant patient and graft survival. As transplant patients? health worsens, caregivers supplement patients? self-care tasks, household and family responsibilities, and provide increased emotional support. Unfortunately, caregivers suffer untoward sequelae as the result of high pre- transplant caregiver burden, manifesting as increased stress, distress, depression, and anxiety, and poorer social functioning. Effectively managing caregiver stress and distress represents a critical unmet need, as proven strategies are lacking in this population. As caregivers are essential for ensuring optimal self- management and transplant outcomes, the objective of this study is to improve caregiver stress and burden, thereby improving caregiver well-being. Health coaching is an effective strategy for stress management in other populations. Here, we propose a randomized trial of a 30-minute telephonic health-coaching intervention once weekly for 12 weeks (compared to usual care) in 60 caregivers for thoracic transplant candidates on the waiting list at Mayo Clinic. Patient-reported outcome instruments measuring stress, caregiver burden, resilience, mood, affect, and quality of life will be measured at baseline and 12-16 weeks after enrollment. The primary outcome will compare end-of-study perceived stress score, adjusted for baseline values. We will also qualitatively assess acceptability and feasibility using open-ended and Likert-scale questions. Secondary outcomes will compare end-of-study caregiver burden, resilience, affect, quality of life, and mood measurements, adjusted for baseline scores. The long-term goal of this application is to optimize post- transplant outcomes through effective pre-transplant interventions. We hypothesize that health coaching will be acceptable and feasible to thoracic transplant caregivers and will improve caregivers? perceived stress. We further hypothesize that future studies will demonstrate that pre-transplant interventions to improve caregiver stress and well-being will be associated with improved outcomes in transplant recipients. This work will provide a potential avenue to improve caregiver stress in the pre-transplant period. The results of this study will be used to refine the intervention and plan for a larger, multi-center trial designed to validate the findings and explore the effects of this caregiver intervention on transplant patients? self-management and transplant outcomes. This proposal supports the NIH mission for improving transplant outcomes in heart and lung disease patients while supporting a junior investigator in her transition to research independence.
Unpaid lay caregivers support patients awaiting heart or lung transplantation by assisting them with essential tasks (such as medical monitoring, activities of daily living, household and family activities, providing emotional and/or financial support). However, pre-transplant caregivers are stressed with high caregiver burden which can have adverse health effects for both the transplant candidate and the caregiver. In this application, we will investigate whether providing pre-transplant heart and lung patients? caregivers a weekly health coaching intervention by telephone is acceptable, feasible, and improves caregiver stress.
