Overview
The investigators are trying to learn more about the personal perceptions and experiences regarding the needs of patients with liver cancer to help improve the care of all patients. The investigators would like to know whether there are needs that patients have or are aware of, especially those needs that the investigators have not been able to address. The investigators aim to develop a program that helps participants and participant's families to navigate the process of being diagnosed with liver cancer and receiving treatment.
Eligibility
Inclusion Criteria:
- HCC Patients:
- Enrolled or eligible for enrollment in Unified Prospective Registry and Biorepository of Patients with Chronic Liver Disease or Hepatobiliary Cancers Including Hepatocellular Carcinoma (HCC) and Cholangiocarcinoma.
- Diagnosis of hepatocellular carcinoma, confirmed by clinical chart review and International Classification of Diseases, Tenth Revision (ICD-10) C22.0.
- Adults, age 18 or older
- Able to provide informed consent
- All other interviewees:
- Advocates who will self-identify as having had HCC.
- Others who self-identify as either a caregiver or support person of an HCC patient.
Physicians/Licensed Independent Practitioners, Social Workers, Nurse Navigators, and
Research Coordinators will all self-identify as being involved in the care of HCC patients.
Exclusion Criteria:
- Unable to speak Spanish or English
- West Haven Grade 2 or higher hepatic encephalopathy19 or other cognitive impairment.
- Adults unable or unwilling to consent
- Individuals who are not yet adults (infants, children, teenagers)
- Prisoners
- Given that this study is minimal risk and there are no risks to a potential fetus,
investigators will not exclude pregnant women; however, no data about pregnancy or
their fetus is being collected