Information overload, financial constraints, and psychological burdens are among the barriers faced by marginalized groups seeking curative treatments for HCC

Lauren D. Nephew ¹

Courtney Moore ²

Nicole Garcia ¹

Lisa Parks ²

Allison McKay ²

Alexandra T. Strauss ³

Sara Wiehe ²

Naga Chalasani ¹

Alexandra T. Hughes-Wegner ¹

Susan M. Rawl ⁴

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Department of Medicine, Division of Gastroenterology and Hepatology, Indiana University, Indianapolis, Indiana, USA |

Department of Community Health Partnerships, Research Jam, Community Health Partnerships, Indiana Clinical and Translational Sciences Institute, Indiana University School of Medicine, Indianapolis, Indiana, USA

Department of Medicine, Division of Gastroenterology and Hepatology, Johns Hopkins University School of Medicine, Baltimore, Maryland, USA |

⁴

Department is Science of Nursing Care, Indiana University School of Nursing, Indiana University Simon Cancer Center, Indianapolis, Indiana, USA

Publication type: Journal Article

Publication date: 2025-02-26

Ovid Technologies (Wolters Kluwer Health)

Journal: Hepatology Communications

scimago Q1

wos Q1

SJR: 2.217

CiteScore: 8.0

Impact factor: 5.6

ISSN: 2471254X

DOI: 10.1097/hc9.0000000000000660

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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.