Abstract

Background: Complete national registry data on hepatocellular carcinoma (HCC) treatment patterns and long-term survival are not available. The aim was to describe treatment provided and survival in patients diagnosed with HCC in Sweden. Methods: Since 2009, Sweden has a national registry of hepatobiliary tumours (SweLiv), where all patients with malignancy in the liver are registered including provided treatments. Patient characteristics, treatment patterns and survival in HCC patients registered between 1 January 2009 and 31 December 2016 were analysed in the study. Kaplan-Meier analysis was used to estimate survival conditional on treatment group. Register completeness for 2009-2016 was 95.6%. Results: 3376 HCC patients were registered. Five hundred-one (14.8%) were resected, 390 (11.6%) ablated and 246 (7.2%) transplanted, as the primary treatment. 476 (14.1%) were offered transarterial chemoembolization (TACE) and 426 (12.6%) systemic sorafenib treatment, the remaining 1337 patients (40.0%) were offered the best supportive care (BSC). Median survival was 1.44 (95% CI: 1.31 - 1.63), 0.48 (95% CI: 0.45 - 0.58) and 0.25 (95% CI: 0.23 - 0.28) years for the TACE, sorafenib and BSC groups, respectively. Overall 5-year survival rates were 75% for transplanted, 50% for resected, and 28% for ablated treated patients. In the 20% of patients with ECOG score 2 offered curative treatment, median survival was not reached during 3 year follow up after transplantation or resection and was 28 months after ablation. After the introduction of national guidelines in 2013, median survival for the entire cohort was 17 months, which is 6 months longer compared with the time-period before. Simultaneously, treatment shifted from BSC towards ablation and resection. Conclusions: The majority of patients with HCC are given active treatment in Sweden. Survival may have improved with the introduction of national guidelines. Selected patients with low performance status seem to benefit from curative treatment.

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