PROJECT SUMMARY/ABSTRACT
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.