Patient and physician expectations regarding disease and treatment of advanced HCC: The prospective PERCEPTION1 study

Abstract

Background & aims: We aimed to explore patient expectations regarding their treatments and prognosis in comparison to physicians' assessments in patients with advanced hepatocellular carcinoma (HCC) receiving systemic treatments.

Methods: We prospectively enrolled 205 patients in France and Belgium with Barcelona Clinic Liver Cancer (BCLC) stage B/C HCC receiving systemic treatment (NCT04823754). Patients completed a 28-question survey and the hospital anxiety and depression scale (HADS), while physicians filled a 17-question survey after the initial consultation. Univariate and multivariate models were used to assess factors associated with concordant patient-physician responses, HADS, as well as predicted (by physicians) and observed overall survival.

Results: Patients had a median age of 68 years with 75% having BCLC C HCC; 86.3% received atezolizumab/bevacizumab. 60% of patients did not discuss life expectancy with the physician. 63% of the patients believed they had a life expectancy >5 years. Among shared questions between patients and physicians, 36.4% concordance was observed; major differences centered on life expectancy with patients more optimistic than physicians. A lower patient-physician concordance was seen with shorter-consultations (p = 0.003), female physicians (p = 0.02), BCLC C (p = 0.03) and >100 HCC patients/year per physician (p = 0.008). Compared to France, patients from Belgium were more likely to be satisfied with the consultation (p <0.001) but were less optimistic about life expectancy. Using HADS, 52% of the patients had anxiety/depression that was correlated with alpha-fetoprotein level (p = 0.03). The predicted median overall survival by physicians was 18 months vs. 13 months for the observed overall survival (weak correlation, ρ = 0.31).

Conclusion: Expectations regarding systemic treatments for advanced HCC differ significantly between patients and physicians, showing notable variations across countries.

Impact and implications: This multicentric prospective study, conducted in France and Belgium, focuses on patients with advanced hepatocellular carcinoma undergoing systemic treatments. The findings of our study underscore the disparities in expectations regarding systemic treatments for advanced hepatocellular carcinoma between patients and physicians, revealing also significant variations between France and Belgium. These results suggest the need for targeted interventions aimed at enhancing patients' comprehension of their disease and fostering better communication between patients and physicians.

Clinical trial number: NCT04823754.

Keywords: hepatocellular carcinoma; immunotherapy; life expectancy; perception; systemic treatment.

Graphical abstract

Fig. 1

Percentages of concordance between patients and physicians in questions in common across the surveys. We represented the % of concordance between patients and physicians for each of the 10 questions in common between both surveys.

Fig. 2

Variables associated with concordance of answers between patients and physicians. We performed multivariate generalized estimating equations with a Gaussian distribution to assess factors associated with concordance of answers between patients and physicians. We used a forest plot depicting the multivariable generalized estimating equations showing the factors associated with concordance of answers between patients and physicians. BCLC, Barcelona Clinic Liver Cancer; EtOH, alcohol intake; MASLD, metabolic associated steatotic liver disease.

Fig. 3

Correlation between overall survival predicted by physicians and overall survival observed in clinical practice. We correlated the predicted overall survival by the physicians and the observed overall survival (overall survival) in patients (using Spearman ρ correlation) in the whole population (ρ = 0.31 [95% CI 0.16–0.44], in patients from Belgium (ρ = 0.26 [95% CI -0.07 to 0.50]) and in patients from France (ρ = 0.33 [95% CI 0.16–0.49]).