The research proposed in this application concerns the needs of caregivers of older adults with hepatocellular carcinoma (HCC), the most common type of primary liver cancer. HCC is a feared complication of chronic liver disease, has a rising incidence, and is difficult to cure. The American Society of Clinical Oncology recommends the routine inclusion of palliative care in the care of people with advanced cancers. However, HCC-specific palliative care programs have not been developed. HCC differs from other solid cancers because it arises most often in the setting of cirrhosis, or scarring that results from chronic liver disease. Caregiver support is a core element of palliative care delivery, yet we know very little about the burden faced by informal caregivers caring for people with HCC. Older adults and their informal caregivers are a subset of this population at risk for unmet caregiver need, as these patients have more complex care needs because of their co-morbidities, and are often not candidates for curative treatments like liver transplantation. Furthermore, recent years have seen rapid advancement in HCC treatments, like chemo- and radioembolization, and chemo-and immunotherapy, and people are living longer with this condition. The objective of this study is to measure burden among informal caregivers of older adults receiving treatments for HCC and to describe their caregiving experience. In the first part, the team will recruit informal caregivers of older adults with intermediate or advanced stage HCC at the time the patient begins treatment (chemo- and radioembolization, stereotactic body radiation, or chemo- /immunotherapies). The team will measure the prevalence of caregiver burden in the population using the Zarit Burden Survey and collect explanatory data about the patient and caregivers. They will use a logistic regression model to identify patient and caregiver characteristics that are associated with increased burden. In the second part, the team will again recruit informal caregiver subjects providing care for older adults with HCC who are receiving treatments for HCC. They will perform semi-structured interviews and collect qualitative data to describe the burden and caregiving experience of the study population. The results will be incorporated into the design of a randomized controlled trial of early palliative care for HCC patients that will occur after the conclusion of the award. The quantitative results of the study?prevalence of burden and sub-groups of caregivers with higher levels of caregiver burden?will be incorporated into the design of the future trial, including power calculations, and the qualitative results will be used to target the content of the planned intervention. The research will take place at the Icahn School of Medicine at Mount Sinai, which has one of the largest liver cancer programs in the United States.
Hepatocellular carcinoma (HCC), the most common type of primary liver cancer has a rapidly rising incidence in the United States, is difficult to cure, and because of concurrent end-stage liver disease, has a unique disease course that is unpredictable and associated with burdensome symptoms. Older adults and their informal caregivers are a vulnerable subset of the affected population, since HCC disproportionately affects older adults and curative therapies are not available in most cases. The research objectives of the current study are to measure and describe burden among informal caregivers of older adults with HCC, the results of which will be incorporated into the design of a future randomized controlled trial of early palliative care for people with HCC and their informal caregivers.
