Liver Transplant-Community Access and Referral Engagement (LT-CARE) Pilot Study

Abstract Cirrhosis is the end-result of chronic liver disease mainly viral hepatitis, metabolic dysfunction-associated steatohepatitis, and alcohol-related liver disease. The only life-saving treatment for decompensated cirrhosis is liver transplantation (LT). Despite the critical need for this lifesaving therapy, there remain significant barriers to accessing LT. While a myriad of disparities exist in the LT care pathway, the largest number of patients in the pathway are in the community awaiting the first step-referral. Previous studies have revealed disparities in LT referrals, with lower odds for Black individuals (OR, 0.19), the uninsured (OR, 0.40), and specific hospital sites (OR, 0.40). Nationally, the waitlist capture rate for decompensated cirrhosis was 0.4 for White individuals and 0.3 for Black individuals; in Indiana, the ratio was only 0.2, ranking in the bottom 5% of all states. At Indiana University Health (IUH), the sole LT center in Indiana, only 5.8% of LT referrals were Black individuals, and less than 1% were Hispanic ethnicity. Many patients experiencing health disparities seek medical care at community gastroenterology (GI) practices where clinicians may not have access to transplant hepatologists and may lack knowledge of specialized evidence-based protocols and policies. This is exacerbated by factors like limited provider time, complexities in navigating the healthcare system, and differing levels of patient literacy and unmet social needs, all of which impede referral. Furthermore, there is variability among community GI practices, including size (i.e. small vs. large) and location (i.e. rural vs. urban), directly impacting the resources available and the capacity to support both providers and patients through the referral process. There is an urgent and unmet need to develop an intervention that addresses this variability but also acknowledges the structural and social barriers faced by patients and caregivers, ultimately improving access to referral. There is currently no multilevel intervention addressing disparities in access to LT. The study team proposes to adapt LT-CARE, a multi-component referral toolkit to address barriers at multiple socioecological levels to improve referral. The study team will use community-based research methods to adapt a usable, acceptable, and feasible toolkit for community GI practices, their patients, and caregivers.