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• W2421662179 abstract "In follow-up of recent publications in the Journal of Hepatology [1van Meer S. de Man R.A. Coenraad M. Sprengers D. Van Nieuwkerk C.M.J. van Oijen M.G.H. et al.Surveillance for hepatocellular carcinoma is associated with better survival: Results from a large cohort in the Netherlands.J Hepatol. 2015; 63: 1156-1163Abstract Full Text Full Text PDF PubMed Scopus (90) Google Scholar, 2van Meer S. de Man R.A. van Erpecum K.J. Reply to “Surveillance for hepatocellular carcinoma: A tale of two countries”.J Hepatol. 2016; 64: 755-756Abstract Full Text Full Text PDF PubMed Scopus (1) Google Scholar], we would like to discuss patients’ expectations of hepatocellular carcinoma (HCC) surveillance. Regular surveillance of high-risk patients is recommended by international guidelines [[3]EASL-EORTC clinical practice guidelines: Management of hepatocellular carcinoma.J Hepatol. 2012; 56: 908-943Abstract Full Text Full Text PDF PubMed Scopus (4568) Google Scholar]. The goal of surveillance is to improve the dismal prognosis by detecting HCC at earlier stages with potential curative treatment options. Unfortunately, sensitivities and specificities of ultrasound and alpha-fetoprotein (AFP) (the most widely used surveillance modalities) to detect HCC are far from perfect and high-level evidence supporting efficiency of surveillance is limited. As a result, HCC surveillance is highly controversial [[4]Lederle F.A. Pocha C. Screening for liver cancer: the rush to judgment.Ann Intern Med. 2012; 156: 387-389Crossref PubMed Scopus (69) Google Scholar]. In clinical practice, there is widespread underuse of HCC surveillance: In the United States only 17% of 1873 cirrhotic patients who developed HCC received regular surveillance [[5]Davila J.A. Morgan R.O. Richardson P.A. Du X.L. McGlynn K.A. El-Serag H.B. Use of surveillance for hepatocellular carcinoma among patients with cirrhosis in the United States.Hepatology. 2010; 52: 132-141Crossref PubMed Scopus (299) Google Scholar]. Also in the Netherlands, only 27% of patients underwent surveillance before HCC diagnosis [[1]van Meer S. de Man R.A. Coenraad M. Sprengers D. Van Nieuwkerk C.M.J. van Oijen M.G.H. et al.Surveillance for hepatocellular carcinoma is associated with better survival: Results from a large cohort in the Netherlands.J Hepatol. 2015; 63: 1156-1163Abstract Full Text Full Text PDF PubMed Scopus (90) Google Scholar]. Possible explanations for this underuse are a lack of knowledge, low detection rate of at-risk individuals, logistic factors and non-adherence of patients [[5]Davila J.A. Morgan R.O. Richardson P.A. Du X.L. McGlynn K.A. El-Serag H.B. Use of surveillance for hepatocellular carcinoma among patients with cirrhosis in the United States.Hepatology. 2010; 52: 132-141Crossref PubMed Scopus (299) Google Scholar]. Patient knowledge and involvement in decision-making are associated with higher HCC surveillance rates [[6]Singal A.G. Volk M.L. Rakoski M.O. Fu S. Su G.L. McCurdy H. et al.Patient involvement in healthcare is associated with higher rates of surveillance for hepatocellular carcinoma.J Clin Gastroenterol. 2011; 45: 727-732Crossref PubMed Scopus (68) Google Scholar]. We recently noticed a profound discrepancy between patients’ expectations of HCC surveillance and real benefits in clinical practice, similar to the overestimation by women of the benefits of mammography for breast cancer surveillance [[7]Biller-Andorno N. Juni P. Abolishing mammography screening programs? A view from the Swiss Medical Board.N Engl J Med. 2014; 370: 1965-1967Crossref PubMed Scopus (198) Google Scholar]. We therefore asked 120 consecutive patients who visited our outpatient clinic and underwent regular HCC surveillance (ultrasound with or without AFP) at an approximate 6-month interval, to fill in a 7-item questionnaire regarding their perceptions of HCC surveillance (response rate 92%, period: 2015). Furthermore, the expectations of 7 Dutch experts in the field of hepatology were evaluated based on a similar questionnaire. Fig. 1 shows the expectations in the 111 responding high-risk patients with underlying chronic liver disease (i.e., 91 cirrhotic patients due to alcohol (n = 14), hepatitis B (n = 11), hepatitis C (n = 32), NASH (n = 11) or other risk factors (n = 23), and 20 non-cirrhotic patients with increased HCC risk due to hepatitis B (n = 18) or F3 fibrosis in hepatitis C (n = 2)). In contrast to current knowledge, most patients expect that: 1) performing regular surveillance can prevent HCC development (Fig. 1A), 2) HCC is always detected by ultrasound (Fig. 1C), and 3) surveillance is only indicated if patients have complaints (Fig. 1D). In multivariate logistic regression analyses (included variables: education level, gender, age, social-economic status, etiology of underlying liver disease, presence of cirrhosis, number of performed surveillance tests), only lower education level was an independent predictor of misconception. Second, patients largely underestimate HCC-related mortality rates. Nearly 50% of patients think that curative treatment is still possible in ⩾40% of HCC cases detected without surveillance (Fig. 1F). Furthermore, many patients believed that surveillance reduces the risk of HCC deaths by ⩾70% (Fig. 1G). Unfortunately, based on current literature, numbers are less positive: curative treatment is possible in approximately 20% of HCC patients diagnosed without surveillance in Western countries [1van Meer S. de Man R.A. Coenraad M. Sprengers D. Van Nieuwkerk C.M.J. van Oijen M.G.H. et al.Surveillance for hepatocellular carcinoma is associated with better survival: Results from a large cohort in the Netherlands.J Hepatol. 2015; 63: 1156-1163Abstract Full Text Full Text PDF PubMed Scopus (90) Google Scholar, 8Singal A.G. Pillai A. Tiro J. Early detection, curative treatment, and survival rates for hepatocellular carcinoma surveillance in patients with cirrhosis: a meta-analysis.PLoS Med. 2014; 11e1001624Crossref PubMed Scopus (492) Google Scholar]. The only randomized controlled trial on efficacy of HCC surveillance with ultrasound in chronic hepatitis B patients, demonstrated that surveillance lowered mortality rates by 37% [[9]Zhang B.H. Yang B.H. Tang Z.Y. Randomized controlled trial of screening for hepatocellular carcinoma.J Cancer Res Clin Oncol. 2004; 130: 417-422Crossref PubMed Scopus (19) Google Scholar]. However, several aspects of this study have been criticized [[4]Lederle F.A. Pocha C. Screening for liver cancer: the rush to judgment.Ann Intern Med. 2012; 156: 387-389Crossref PubMed Scopus (69) Google Scholar]. In contrast to the first part of the questionnaire (Fig. 1A–D), lower education level was no predictor for misconception about HCC-related mortality in multivariate analyses (Fig. 1E–G). Expectations of Dutch experts in the field of hepatology were markedly lower than patients’ expectations. For example, most experts thought that HCC surveillance in the current form does not lower HCC-related mortality at all. Overestimation by patients of benefits of cancer surveillance programs is common [[7]Biller-Andorno N. Juni P. Abolishing mammography screening programs? A view from the Swiss Medical Board.N Engl J Med. 2014; 370: 1965-1967Crossref PubMed Scopus (198) Google Scholar]. Misconceptions impair the ability to make informed decisions. For example, clearing the misconception that surveillance is only indicated in case of complaints may result in higher rates of adequate surveillance. In the current era of increased awareness and doctors’ obligations to provide adequate information about benefits and risk, better education on HCC surveillance is needed in high-risk patients with underlying chronic liver disease. Finally, focus should be on healthcare delivery, for example by the implementation of quality improvement measures including recall policies, which will increase surveillance rates [[10]Aberra F.B. Essenmacher M. Fisher N. Volk M.L. Measures quality improvement lead to higher rates surveillance hepatocellular carcinoma in patients with cirrhosis.Dig Dis Sci. 2013; 58: 1157-1160Crossref PubMed Scopus (45) Google Scholar]. The authors declared that they do not have anything to disclose regarding funding or conflict of interest with respect to this manuscript. Van Meer S, Lieveld FI and van Erpecum KJ designed the study, collected patient data and wrote the manuscript; van Erpecum KJ supervised the manuscript. All authors approved the final version of the manuscript." @default.
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• W2421662179 title "Patients’ misconceptions about surveillance for hepatocellular carcinoma: Education is needed" @default.
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