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While patients with hepatocellular carcinoma largely felt independent, their caregivers reported burdens related to appointment logistics and emotional support.
In a presentation at the 2024 ASCO Annual Meeting, researchers reported the experiences and unmet supportive needs of patients with hepatocellular carcinoma (HCC) and the people who care for them.
HCC predominantly affects older adults, who often rely on informal, unpaid caregivers such as family members.
“Despite rising incidence of advanced HCC worldwide, little is known about the experiences and unmet supportive needs of patients and their informal CGs, particularly in the context of contemporary first-line immunotherapy-based treatment,” wrote Meng Wu, MD, and colleagues affiliated with Icahn School of Medicine at Mount Sinai.
The investigators conducted two cross-sectional, descriptive studies in parallel at a single academic center. The studies included non-dyadic older patients undergoing treatment for HCC and their family caregivers. Eligible caregivers were aged 18 or older and identified by patients, while eligible patients were 60 or older and received systemic treatment for Barcelona Clinic Liver Cancer stage B or C HCC.
Caregivers completed the Zarit Burden Interview (ZBI), and all participants underwent semi-structured interviews focusing on their experiences and needs. The researchers transcribed the interviews, and then at least two investigators analyzed their content using an inductive approach.
The researchers interviewed eight patients and eight caregivers between November 2021 and November 2023. Caregivers were predominantly women (87.5%), and their median ZBI score was 20 out of 88, indicating little or no burden. However, ZBI scores ranged from 2 to 64, with higher scores indicating greater burden.
Four major themes emerged: caregiver tasks, sources of burden, sources of support, and views of palliative care. Caregiver tasks included coordinating medical appointments and transport, attending appointments, advocating for patients, and helping with household chores. The logistics of medical visits and supporting patients through physical and emotional symptoms were the most common sources of burden. Caregivers found support from spouses, family, friends, church groups, and therapists.
Patients were largely men (87.5%) with a median age of 70. Half of patients were non-Hispanic White, 25% were Black, and 25% were Hispanic. In contrast with caregivers, patients expressed strong themes of independence with statements like, “I don’t need any help,” “I am independent… so far,” and “I live alone, I’ve got my own place, I do the best I can for myself.”
Some patients mentioned that caregiver support was more spiritual or emotional, which was particularly important during new diagnoses or disease progression, saying, “I feel stronger because you’re there.”
“Levels of burden varied among caregiver participants. Patient participants felt independent for the most part while receiving their treatments, consistent with improved functional status and QOL experienced by those receiving combination therapy,” Dr. Wu and colleagues reported.
The investigators emphasized that managing logistics for numerous medical visits was a significant challenge for caregivers, and clinicians may help alleviate this burden through more effective care coordination.
“Strategies to optimize care coordination, including increased use of navigation for those with advanced HCC, may help patients and their caregivers live better as they live longer on improved treatments,” Dr. Wu and coauthors concluded.
The National Institute on Aging funded the research.
