Current level of shared decision-making in hepatobiliary surgical oncology (SAPACHA)

Background: Shared decision-making (SDM) may improve patient autonomy and health outcomes. This study assessed the level of SDM at both ends of the spectrum of hepatobiliary surgery to identify needs and opportunities for improvement. Methods: A mixed-methods study was performed. Consultations regarding surgery for perihilar cholangiocarcinoma (pCCA) or hepatocellular adenoma (HCA) were prospectively included between September 2020 and December 2022. The level of patient involvement in treatment decision-making was assessed objectively by analysis of audio-recorded consultations using the OPTION-5 instrument. The perceived level of SDM was appreciated by patients (SDM-Q-9) and surgeons (SDM-Q-doc) through questionnaires. Higher scores indicated higher levels of SDM. Outcomes were compared between patient groups and two focus groups were held. Results: Ten pCCA- and nine HCA-patients were included in the quantitative part of the study. Median OPTION-5, SDM-Q-9 and SDM-Q-doc scores were 35% (IQR: 25–45%), 86% (IQR: 76–96%), and 73% (IQR: 71–78%), respectively. SDM-Q-9 scores among HCA-patients (79% [IQR: 71–82%]) were significantly lower than in pCCA-patients (96% [IQR: 93–100%], p < 0.001). In focus groups, patients reported a lack of information, support, and expressed positive attitudes towards decision support tools (DSTs). Conclusion: Patient involvement and information provision among HPB-surgical patients show room for improvement, particularly for HCA-patients. DSTs may be helpful for this purpose.