Bailey Submits NIH R01 Application

Kudos to Chip Bailey and his entire team for the submission of his NIH R01 application entitled "Trajectories of Caregiver Self-Management and Health (TRAC-SM)." This proposal requests funding for a five-year period with a start date of July 1, 2019.

Caregivers of the nearly 5.5 million people suffering from chronic or end stage liver disease (ESLD) face daily challenges exacerbated by the unpredictable trajectory of patient symptoms and status. Their challenges are different when compared with other caregiving groups as care recipients are younger, often uninsured, have increased rates of hospitalization and readmission within 30 days, have limited access to post-acute care and have higher rates of admission to hospice. This negatively affects the health of caregivers for patients with chronic or ESLD patients in need of liver transplant. Caregivers struggle to manage these unpredictable and ever changing patient symptoms and conditions including malnutrition with muscle wasting, gastrointestinal bleeding and encephalopathy with temporary memory loss. Patients with encephalopathy experience aggressive behavior and acute confusion leaving caregivers feeling stressed and struggling to manage this grave symptom. Caregivers put their own lives on hold, limiting their ability to self-manage their own health. Self-management is a process by which caregivers use knowledge, skills and beliefs to improve or maintain their health while at the same time supporting self-management of a loved one. Caregiver self-management takes place in the context of the physical and social environment and the patient, and this influences caregiver health. The negative impact of patient symptoms on caregiver health is well documented in conditions with a downward trajectory such as cancer and cardiovascular disease; recent caregiver studies in these conditions are focused on how caregiver self-management might improve caregiver health. However, no studies have focused on self-management and health in caregivers of patients with ESLD or other diseases with unpredictable trajectories. The proposed 5-year descriptive study will fill this critical gap in caregiver self-management science. We will collect prospective longitudinal data for 2 years on 240 family caregivers and 240 ESLD patients who are being evaluated for liver transplant to identify individual characteristics and caregiver self-management processes that influence caregiver self-management behaviors, global health behaviors and quality of life outcomes. This project has three aims: 1) Identify and compare patterns of change (trajectory classes) in self-management processes, proximal outcomes, and distal outcomes across the 24-month period among caregivers of ESLD patients undergoing assessment for liver transplantation; 2) Determine the caregiver demographic characteristics (age, sex, race, ethnicity, education level, employment status, household member total count) and patient characteristics (age, sex, race, ethnicity, education level, employment status; MELD Na scores and status across 24 months) associated with each trajectory class for the distal outcomes (global health, quality of life) among caregivers of patients with ESLD undergoing assessment for liver transplantation; and 3) Characterize self-management strategies among caregivers of patients with ESLD.