2025. Digestive Disease Week Abstract and Poster: DIVERSITY AND SOCIOECONOMIC STATUS OF PATIENTS WITH PRIMARY SCLEROSING CHOLANGITIS (PSC) AND ITS IMPACT ON HEALTHCARE RECEIVED, A SURVEY OF PSC PARTNERS PATIENT REGISTRY

Authors: Kidist Yimam, MD, Vishwajit Kode, MD, Rachel Gomel, Mary P. Vyas, Joanne Hatchett, Brian Thorsen, Willie McKinney, PhD, Ricky Safer

Abstract: (Updated results from a larger response pool are presented in the poster above.)

Background: Primary sclerosing cholangitis (PSC) is a rare, cholestatic liver disease, characterized by progressive stricturing of bile ducts, with risk of progression to cirrhosis and liver failure needing liver transplantation. There is no approved medical therapy for PSC except liver transplantation. A timely diagnosis, clinical monitoring and access to a liver center with opportunities to participate in PSC clinical trials is crucial in the care of patients with PSC.

Aims: Evaluate the association between socioeconomic status and patients’ diversity on healthcare experience and clinical outcomes in patients with PSC.

Method: A detailed, 20-point, health-equity survey was developed by PSC Partners Health Equity Working Group. The survey included questions on demographic data, race, ethnicity, sexual orientation, location of residence, health insurance type, educational level, household size and income, baseline clinical data and outcomes. The survey was administered via the PSC Partners Patient Registry. The answers were summarized, and statistical analysis was performed for potential associations between diversity and socioeconomical status and clinical care and outcomes.

Results: 421 patients completed the health equity survey in the Registry. Ten patients were excluded due to missing crucial data. Their baseline characteristics with clinical outcomes (Table 1) and healthcare access and experiences (Table 2) are summarized below. The Registry has mostly White patients with English language preference and female predominance. Most patients are not employed fulltime (56%) and no dependents (48%). One third of patients experienced delay in PSC diagnosis. Most patients have primary care doctors, gastroenterologist and hepatologist (all). 65% of patients are not participating in PSC clinical trials. In this very active patient advocacy group with 33% having themselves or family member in the healthcare field, only 65 % have a good understanding of their PSC management. Significant findings include: IBD diagnosis predicting colonoscopy adherence (p-values <0.0001, liver transplant status associated with better understanding of PSC management (p=value <0.001) and household income correlating with satisfaction of care (p-value <0.001).

Conclusion: This health equity survey in PSC highlighted the need to make a robust effort to include diverse patients in the PSC registry. Additionally, efforts need to be made to educate patients and caregivers about PSC as we anticipate that the understanding of the disease and engagement in PSC clinical trials is even lower in PSC patients not connected with PSC Partners. We plan to expand this healthy equity survey to the general PSC population globally to understand healthcare disparities and their causes so that meaningful efforts can be made to mitigate these variables, promoting health equity for all affected by PSC.