Educational, financial, logistical, emotional, and social needs among patients with hepatocellular carcinoma

BACKGROUND: Patient navigation has been proposed as a primary method of facilitating successful treatment and outcomes for cancer patients. In order to design a navigation program specific for HCC patients, the aims of this study were 3-fold: (1) to identify the needs of HCC patients, (2) to identify barriers to the successful treatment of HCC, and (3) to identify specific supports needed for the successful treatment of HCC. METHODS: In-depth qualitative interviews, lasting 60-90 minutes, were conducted with 42 individuals, including 14 patients, 7 caregivers, 8 advocates, 2 research coordinators, and 11 providers. The specialty of the provider participants included Hepatology, Transplant Surgery, Medical Oncology, Radiation Oncology, and Interventional Radiology. Advanced practice providers, social workers, and nurse navigators were also included. Patients, caregivers, and providers were recruited from 2 healthcare systems in South Florida. Advocates were recruited through collaboration with the Global Liver Institute and the Hepatitis B Foundation. RESULTS: The interviews identified 5 overarching themes representing the navigation needs of HCC patients: (1) Education/Health Literacy, (2) Financial Resources, (3) Coordination of Care, (4) Emotional/Mental Health Management, and (5) Social Support. These overarching themes were composed of various subthemes, which further delineated the specific needs that patients and caregivers have in the context of their HCC treatment. CONCLUSIONS: This study provides valuable insight into the needs of patients with HCC and their caregivers. Key stakeholders in the field of HCC provided valuable insights into the multidimensional needs of patients with HCC, identifying areas to target with high-quality interventions. To best meet the treatment needs of patients with HCC, successful navigation should include interventions targeted at addressing each of these areas of need.