Beyond tumor response: hope and decision regret during immunotherapy for hepatocellular carcinoma

Immunotherapy-targeted combination therapy has transformed hepatocellular carcinoma (HCC) treatment, yet longitudinal patient-reported outcome (PRO) trajectories remain poorly characterized. We prospectively examined decision regret, hope, fatigue and quality of life during first-line treatment.

This convergent mixed-methods study enrolled 33 patients initiating first-line immunotherapy-targeted therapy at a Taiwan medical center (December 2022-October 2023). PROs were assessed across six cycles using validated instruments, and all participants were interviewed. Strands were integrated through joint display analysis.

Twenty-one patients (63.6%) completed six cycles; 12 (36.4%) discontinued. Completers maintained stable PROs with low regret, whereas discontinuers declined faster in EQ-5D utility (interaction B =  - 0.169 per cycle, p = .007) and showed a larger, non-significant rise in regret (+ 9.58, p = .051, d = 0.50; between-group p = .042). Hope declined in both groups (- 1.48, p = .003), correlating negatively with regret (r =  - .383, p = .028). Interviews centered on treatment-related discomfort (24/33), sustained hope for disease control (31/33) and financial strain (25/33); where regret was voiced (3/33) it concerned earlier points in the illness course rather than the current treatment decision. Integration yielded four expanded meta-inferences and one discordance, between measured and voiced regret.

Treatment completers maintain stable PROs, but more than one-third discontinued and experienced worse fatigue and greater regret, supporting pre-treatment counselling that is honest and informative rather than reassuring. Discontinuation marks a psychologically vulnerable transition, while universal hope decline warrants psychosocial monitoring for all patients. Given the sample size, predictors of regret are hypothesis-generating.