Alpha 2.0
Login Register
» Articles » PMID: 40008878

Information Overload, Financial Constraints, and Psychological Burdens Are Among the Barriers Faced by Marginalized Groups Seeking Curative Treatments for HCC

Overview
Journal Hepatol Commun
Specialty Gastroenterology
Date 2025 Feb 26
PMID 40008878
Authors
Lauren D Nephew
Courtney Moore
Nicole Garcia
Lisa Parks
Allison McKay
Alexandra T Strauss
Sara Wiehe
Naga Chalasani
Alexandra T Hughes-Wegner
Susan M Rawl
Affiliations
Soon will be listed here.
Abstract

Background: Patients with HCC face numerous barriers to curative therapies, particularly Black patients and those impacted by adverse social determinants of health (SDOH). This study aimed to identify patient-reported barriers and facilitators to curative therapies, to inform interventions that improve equitable access to care.

Methods: We conducted 2 qualitative sessions with Black participants and participants experiencing adverse SDOH with HCC referred for liver transplant (LT) or resection. We also conducted one-on-one interviews with participants from sessions that underwent LT (n=2). Human-centered design methods, including journey mapping and group ideation, were used to identify challenges and solutions at various stages in the care pathway. Data were analyzed to identify key themes and to compare the experiences of Black patients with those experiencing adverse SDOH.

Results: Both groups faced significant barriers, particularly related to information overload, communication gaps with health care providers, and the complexity of navigating the LT pathway. However, Black patients reported additional challenges related to the psychological burden of the diagnosis and distrust in the health care system, while those with adverse SDOH frequently cited financial instability, lack of social support, and challenges in coordinating care between multiple health systems. Despite these differences, common facilitators included compassionate health care teams and strong personal support networks. Both groups suggested solutions such as improvements in education timing and delivery, better communication pathways, and peer support groups to improve preparedness for treatment and recovery.

Conclusions: While Black patients and those with adverse SDOH experience unique barriers, common threads-such as information gaps and desire for peer support suggest shared opportunities for interventions.

References
1.
Ramos S, Warren R, Shedlin M, Melkus G, Kershaw T, Vorderstrasse A . A Framework for Using eHealth Interventions to Overcome Medical Mistrust Among Sexual Minority Men of Color Living with Chronic Conditions. Behav Med. 2019; 45(2):166-176. PMC: 6793989. DOI: 10.1080/08964289.2019.1570074. View
2.
Lu H, Xie J, Gerido L, Cheng Y, Chen Y, Sun L . Information Needs of Breast Cancer Patients: Theory-Generating Meta-Synthesis. J Med Internet Res. 2020; 22(7):e17907. PMC: 7420822. DOI: 10.2196/17907. View
3.
Edmonds B, Hoffman S, Lynch D, Jeffries E, Jenkins K, Wiehe S . Creation of a Decision Support Tool for Expectant Parents Facing Threatened Periviable Delivery: Application of a User-Centered Design Approach. Patient. 2018; 12(3):327-337. PMC: 6686668. DOI: 10.1007/s40271-018-0348-y. View
4.
Paradise R, Dryden E, Elvin D, Fisher C, Touw S, Trumble L . Incorporating patient input into the design of a disease management program for COPD. Healthc (Amst). 2019; 8(1):100363. DOI: 10.1016/j.hjdsi.2019.05.003. View
5.
Hundt M, Chen A, Donovan J, Kim N, Yilma M, Tana M . Barriers to liver transplant referral in safety net settings: A national provider survey. Liver Transpl. 2024; 30(9):896-906. DOI: 10.1097/LVT.0000000000000384. View