Background: The impact of financial burden on the lived experience of adults with chronic liver disease (CLD) is not fully understood. We sought to evaluate the association of high financial burden with physical and psychological symptom burden and health-related quality of life (HRQOL) among adults undergoing liver transplant (LT) evaluation.

Methods: We conducted a multicenter prospective study of adult patients undergoing LT evaluation between 5/2023-10/2023 across 11 US transplant centers. Participants completed a sociodemographic survey and those who reported spending >/=10% of their annual household income on out-of-pocket medical costs were classified as having high financial burden. Participants also completed the Edmonton Symptom Assessment Scale (ESAS) measuring the severity of 10 commonly experienced symptoms among patients with CLD (pain, tiredness, drowsiness, nausea, lack of appetite, shortness of breath, depression, anxiety, poor well-being and muscle cramps) and the EQ-5D-5L HRQOL questionnaire (using the EQ-VAS visual analog scale, range 0-100). We compared the frequencies of patients reporting moderate-to-high severity (score>/=4 out of 10) for each ESAS symptom by financial burden status. We conducted logistic regression analyses to evaluate the associations among high financial burden, symptom burden and HRQOL.

Results: 306 adults undergoing LT evaluation were enrolled with a median age of 59 (IQR 48-65) and MELD-Na of 16 (IQR 11-21). Most had alcohol-related liver disease (49%). The majority were male (58%) and White (82%) with 26% being Hispanic. 46% had an annual household income of under $50,000, 35% had public insurance and 28% were employed. In total, 26% of participants reported high financial burden.

The most frequently reported moderate-to-severe symptoms were tiredness (73%), drowsiness (58%), poor well-being (57%), and pain (50%). High financial burden was significantly associated with higher rates of moderate-to-severe pain (61% vs 45%, p=0.01), shortness of breath (36% vs 23%, p=0.02), and anxiety (44% vs 28%, p=0.01) (Figure).

Patients with high financial burden had higher total ESAS scores (35 vs 30, p=0.045) suggesting higher symptom burden and lower scores on EQ-VAS (55 vs 64, p=0.003) suggesting worse health.

After controlling for marital status, income, employment, insurance, and center, higher financial burden was significantly associated with EQ-VAS (beta, -6.9; 95% CI, -13.0 to -0.9) but not total ESAS score (beta, 4.7; 95% CI, -0.9 to 10.3).

Conclusions: In this multicenter study of adults undergoing LT evaluation, over 1 in 4 reported high financial burden which was associated with higher symptom burden, particularly for pain, shortness of breath and anxiety, and lower HRQOL. The interplay between financial burden, symptom burden and HRQOL highlights the importance of screening for and addressing these factors.

Nneka Ufere

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