Exploring Patient and Provider Narratives: A Qualitative Study Identifying Barriers in Liver Transplantation Referral

Background Chronic liver disease represents a significant public health burden in the United States. Liver transplantation (LT) is the only life-saving option for patients with decompensated cirrhosis. Receiving transplantation is a multi-step process, beginning with referral. Barriers to CLD care and transplantation disproportionately affect medically underserved populations, including racial and ethnic minorities and individuals of low socioeconomic status. This study expands the limited research into liver transplantation referrals to identify systemic, interpersonal, and informational barriers. Methods Expanding the limited research into barriers to liver transplantation referrals, this study examines experiences from both patients and providers. Semi-structured interviews of 15 patients and 11 providers across 10 different community gastroenterology practices in Indiana occurred and were transcribed verbatim. Data was analyzed using a six-phase framework for thematic analysis, conducted via HyperRESEARCH 4.5.2. Results Patient participants were majority male (n = 10) with five female participants, and an age range from 31–71 years (x̄ =55.3, SD = 13.1). Provider participants were comprised of eight physicians, two nurse practitioners, and one physician assistant. All providers practiced specialties related to general GI or advanced GI care. Themes identify barriers such as long travel distances, appointment wait times, system communication challenges, limitations in provider tools for referral, and lack of support resources for patients. Conclusions Addressing these barriers may expand liver transplantation referrals, especially among medically underserved communities and marginalized populations.