Multicenter study of racial and ethnic inequities in liver transplantation evaluation: Understanding mechanisms and identifying solutions

Abstract

Racial and ethnic disparities persist in access to the liver transplantation (LT) waiting list; however, there is limited knowledge about underlying system‐level factors that may be responsible for these disparities. Given the complex nature of LT candidate evaluation, a human factors and systems engineering approach may provide insights. We recruited participants from the LT teams (coordinators, advanced practice providers, physicians, social workers, dieticians, pharmacists, leadership) at two major LT centers. From December 2020 to July 2021, we performed ethnographic observations (participant–patient appointments, committee meetings) and semistructured interviews (N = 54 interviews, 49 observation hours). Based on findings from this multicenter, multimethod qualitative study combined with the Systems Engineering Initiative for Patient Safety 2.0 (a human factors and systems engineering model for health care), we created a conceptual framework describing how transplant work system characteristics and other external factors may improve equity in the LT evaluation process. Participant perceptions about listing disparities described external factors (e.g., structural racism, ambiguous national guidelines, national quality metrics) that permeate the LT evaluation process. Mechanisms identified included minimal transplant team diversity, implicit bias, and interpersonal racism. A lack of resources was a common theme, such as social workers, transportation assistance, non–English‐language materials, and time (e.g., more time for education for patients with health literacy concerns). Because of the minimal data collection or center feedback about disparities, participants felt uncomfortable with and unadaptable to unwanted outcomes, which perpetuate disparities. We proposed transplant center–level solutions (i.e., including but not limited to training of staff on health equity) to modifiable barriers in the clinical work system that could help patient navigation, reduce disparities, and improve access to care. Our findings call for an urgent need for transplant centers, national societies, and policy makers to focus efforts on improving equity (tailored, patient‐centered resources) using the science of human factors and systems engineering.

Primary Sclerosing Cholangitis-Autoimmune Hepatitis Overlap Syndrome: Significant Barriers in Liver Disease Diagnosis and Treatment Experienced by the Latino Community

“…Socioeconomic factors also come into play in the Latino population as it has been reported that lower-income individuals have diets primarily comprised of fast foods and sugar-rich snacks and drinks. Data in the past has shown that 25% of Latin American adults live at or below the poverty line, being much higher than the 11% that has been reported for the non-Hispanic white population, and this is related to a more significant impact of SDOH like the language barriers and lack of access to care [ 12 , 13 ].…”

Navigating the road to liver transplantation equity

“…Second, factors internal to the transplant evaluation team may also contribute to waitlisting disparities. Limited personnel and resources may be insufficient to match the support and health literacy needs of patients undergoing the transplant process 7. In addition, implicit and explicit biases actively promote disparities and deteriorate the level of patient-provider trust needed to navigate the evaluation process 7…”

“…[7] In addition, implicit and explicit biases actively promote disparities and deteriorate the level of patient-provider trust needed to navigate the evaluation process. [7] Available data suggests comparable rates of liver transplant between waitlisted Black and White adult patients in the Model for End-Stage Liver Disease era. Yet, there are some differences that are not well explained in transplant: Black pediatric patients experience higher rates of mortality on liver transplant waitlists, lower rates of living donor liver transplants, and less frequent requests for nonstandard Model for End-Stage Liver Disease exception points.…”

Critical interactions between race and the highly granular area deprivation index in liver transplant evaluation

“…Racial, ethnic, and socioeconomic status (SES) disparities persist in access to liver transplantation (LT) 1–4 . While mechanisms for the relationships between race, ethnicity, SES, and LT are complex and not fully understood, structural racism and social determinants of health (SDOH) likely are contributors 1–4 .…”

“…Racial, ethnic, and socioeconomic status (SES) disparities persist in access to liver transplantation (LT) 1–4 . While mechanisms for the relationships between race, ethnicity, SES, and LT are complex and not fully understood, structural racism and social determinants of health (SDOH) likely are contributors 1–4 . For instance, due to the significant patient time and resources involved in LT evaluation, as well as the post‐transplant requirements for close follow‐up care and medication compliance, SES factors likely play a significant role in completion of LT evaluation and listing.…”