Patient-Perceived Risk of Hepatocellular Carcinoma and Net Benefit of Surveillance: A Multicenter Survey Study.

introductionHepatocellular carcinoma (HCC) surveillance is underused in clinical practice, and few contemporary data have assessed patients' perceptions of surveillance effectiveness and net benefit.

methodsWe 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.

resultsRespondents (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 that surveillance improves early HCC detection (80.3%) and survival (77.9%). While 74.0% of patients reported that 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 nonresponse biases, which may result in an overestimation of reported surveillance benefits and patient acceptance. DISCUSSION: Most patients with cirrhosis followed at academic health systems have high knowledge about HCC surveillance, believe that it is beneficial, and express interest in undergoing surveillance after being counseled about the benefits and harms.