A Dyadic Approach to Understanding Transplant Self-Care and Outcomes: A Mixed Methods Study
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Project Summary. Organ transplantation can extend survival and improve health-related quality of life (HRQOL) for patients with organ failure. Yet, up to 20% of those who need a transplant are deemed ineligible because of inadequate caregiver support—a contraindication to listing despite limited supporting evidence. Lung transplant patients are a complex population whose highly burdensome transplant self-care is often inadequate, and with morbidity and mortality rates substantially higher than other transplant types. Evidence suggests that caregiver support can mitigate poor clinical and HRQOL outcomes, but this evidence is weak and inconsistent, and the mechanistic pathways explaining this relationship are unknown. Rather, the caregiver criterion is predicated on a clinical assumption that caregiver contributions to transplant care, in partnership with the patient as a dyad, are vital for managing the demanding post-transplant self-care regimen and ultimately improving transplant outcomes. Yet, transplant research has mostly focused on patient contributions to self-care, rarely evaluating caregiver contributions, or transplant self-care as a dyadic phenomenon. To address this gap, we will conduct a convergent mixed-methods longitudinal study (QUANT+QUAL) to test the clinical assumption and our hypothesis that caregiver contributions to transplant self-care—within the context of the patient–caregiver dyad—is a key determinant of clinical and HRQOL outcomes across the transplant trajectory. We will prospectively enroll 410 patient-caregiver dyads through the NHLBI-funded multi-site Lung Transplant Consortium (LTC) PROMISE study, a prospective cohort study enrolling and collecting clinical outcome and HRQOL data from >2,600 lung transplant patients before and after transplant. After the LTC PROMISE study ends, we will extend the established infrastructure and procedures to continue enrollment at three LTC transplant sites. In Aim 1, we will assess the impact of the caregiver (operationalized as caregiver’s contribution to transplant self-care)⎯within a patient-caregiver dyad⎯on lung transplant outcomes. We hypothesize that trajectories of change in patient and caregiver contributions to transplant self-care are associated with patient (HRQOL, 1-year transplant survival, unplanned hospitalizations) and caregiver (HRQOL, self-care) outcomes. In Aim 2, we will identify individual- and dyad-related determinates of patient and caregiver contributions to transplant self-care. In Aim 3, we will further evaluate dyads’ experiences and perspectives on the factors influencing patient and caregiver contributions to self-care and outcomes across the transplant trajectory through qualitative interviews. We will perform a mixed-methods integration, comparing inferences from all three aims to develop integrated meta- inferences. Findings will generate evidence to guide candidate selection and identify modifiable targets and timing for future caregiver and dyadic interventions that aim to strengthen transplant candidacy, the dyad’s ability to manage transplant care, and improve outcomes for patients and caregivers.
