Patient-perceived risk of HCC and net benefit of surveillance: A multi-center survey study.

BACKGROUND Hepatocellular carcinoma (HCC) surveillance is underused in clinical practice, and few contemporary data have assessed patients' perceptions of surveillance effectiveness and net benefit. METHODS We conducted a survey study among adult patients with cirrhosis at 7 health systems in the United States. The survey was based on validated measures, when available, and assessed patient knowledge about HCC surveillance, attitudes regarding surveillance benefits and harms, perceived HCC risk, and trust in their doctors. RESULTS Respondents (n=665; median age 60; 46.5% female) were knowledgeable about HCC surveillance, with no significant differences across sociodemographic groups; however, approximately 1 in 5 patients had knowledge gaps about the need and benefit of surveillance. Over three-fourths of patients believed surveillance improves early HCC detection (80.3%) and survival (77.9%). Whereas 74.0% of patients reported doctors had discussed surveillance benefits, only 54.2% recalled a discussion about potential harms. Patients placed greater importance on surveillance benefits but expressed harms should be measured when assessing the net benefit of surveillance programs. Based on a pictogram depicting current estimates for surveillance benefits and harms, 93.2% of patients chose to undergo surveillance, with no significant differences by race, perceived surveillance benefits, or fear of dying from HCC. Study limitations include response and non-response biases, which may result in an over-estimation for reported surveillance benefits and patient acceptance. CONCLUSION Most patients with cirrhosis followed at academic health systems have high knowledge about HCC surveillance, believe it is beneficial, and express interest in undergoing surveillance after being counseled about the benefits and harms.