Abstract
263 Background: Hepatocellular carcinoma (HCC), the 2 nd leading cause of cancer mortality, disproportionately affects racial and ethnic minorities. Disparities in risk are compounded by profound differences in HCC treatment and survival. Black patients are consistently diagnosed at more advanced stages, least likely to receive treatment, and have the lowest survival. In other cancer types, navigation facilitates successful treatment and improves outcomes. To inform development of a longitudinal navigation program, we aimed to ascertain the needs of HCC patients, and identify obstacles limiting access to cancer treatment and supports needed for successful HCC treatment from the vantage point of patients and other stakeholders. Methods: In-depth, one-hour qualitative interviews were conducted with 40 individuals (14 patients, 7 caregivers, 8 advocates, and 11 providers) in English or Spanish. Providers included physicians, advanced practice providers, social workers, nurse navigators, and transplant coordinators involved in HCC care. We recruited patients, caregivers, and providers from the Sylvester Comprehensive Cancer Center and Jackson Health System; advocates were recruited through partnerships with Global Liver Institute and the Hepatitis B Foundation. Results: The interviews identified five overarching themes representing navigation needs of HCC patients: (1) Education/ Health Literacy, (2) Financial Resources, (3) Coordination of Care, (4) Emotional Management, and (5) Social Support. The table displays the themes and subthemes. Conclusions: This study provides valuable insight into the needs of HCC patients at the institutional and national levels. Successful navigation must include interventions that address these needs; study findings have informed our pilot navigation intervention. Navigation needs of HCC patients. Themes Subthemes Education Disease progression and prognosisTreatment optionsPreparation for various stages of disease and treatmentEducation and preparation for upcoming visitsImportance of follow-upNutrition and other health behaviors Financial Resources Insurance–treatment/medication coverage andcopaymentsTransportationHousing/ RentFoodConnection to other agencies/ community resources (Medicare/ Medicaid, funding programs, foundations/ non-profits targeting HCC, advocacy) Coordination of Care Scheduling multiple doctor/lab visitsFollow-up for attendance to visitsMedical records ordered and receivedImaging done correctly and receivedServices to manage symptoms (Nutrition, acupuncture, massage, etc.) Emotional Management Manage anxiety/ depression/ overwhelm/ confusion/ denial/ fatiguePsycho-oncology/psychiatrist referralAlcohol and substance abuse treatmentSupport groupsStress reduction/ coping strategiesMindfulness/ meditationYoga/ Movement Limited Social Support Mental healthTransportationTreatment adherence