- Email: [email protected]
Patients’ misconceptions about surveillance for hepatocellular carcinoma: Education is needed
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JOURNAL OF HEPATOLOGY
Corresponding author. Address: 585 University Avenue, 13NU-1314, Toronto M5G 2N2, Canada. Tel.: +1 (416) 340 4800x8763; fax: +1 (416) 340 4890. E-mail address: [email protected]
Alice Tseng David K. Wong Immunodeficiency Clinic, University Health Network, Toronto, Canada
Patients’ misconceptions about surveillance for hepatocellular carcinoma: Education is needed 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 P40% of HCC cases detected without surveillance (Fig. 1F). Furthermore, many patients believed that surveillance reduces the risk of HCC deaths by P70% (Fig. 1G). Unfortunately,
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To the Editor: In follow-up of recent publications in the Journal of Hepatology [1,2], we would like to discuss patients’ expectations of hepatocellular carcinoma (HCC) surveillance. Regular surveillance of high-risk patients is recommended by international guidelines [3]. 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]. 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]. Also in the Netherlands, only 27% of patients underwent surveillance before HCC diagnosis [1]. 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]. Patient knowledge and involvement in decision-making are associated with higher HCC surveillance rates [6]. 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]. 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
Fig. 1. Patients’ perceptions of HCC surveillance. (A) The goal of surveillance is to prevent liver cancer development. (B) The goal of surveillance is to detect liver cancer in early stage when curative treatment is still possible. (C) Abdominal ultrasound always detects liver cancer if present; (D) Surveillance for liver cancer is only necessary if patients have complaints; (E) When HCC is detected by surveillance, curative treatment is still possible in ± 20%, 40%, 60% or 80%. (F) When HCC is detected in patients without surveillance, curative treatment is still possible in ± 20%, 40%, 60% or 80%; (G) By performing surveillance with abdominal ultrasound at a 6-month interval, the 5-year mortality of HCC patients is reduced: hardly, with ± 40%, 70% or 90%. Correct answers are marked with # symbol.
Journal of Hepatology 2016 vol. 65 j 645–654
653
Letters to the Editor based on current literature, numbers are less positive: curative treatment is possible in approximately 20% of HCC patients diagnosed without surveillance in Western countries [1,8]. 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]. However, several aspects of this study have been criticized [4]. 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]. 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].
Conflict of interest The authors declared that they do not have anything to disclose regarding funding or conflict of interest with respect to this manuscript.
Author’s contributions Van Meer S, Lieveld FI and van Erpecum KJ designed the study, collected patient data and wrote the manuscript; van Erpecum
654
KJ supervised the manuscript. All authors approved the final version of the manuscript. References [1] van Meer S, de Man RA, Coenraad M, Sprengers D, Van Nieuwkerk CMJ, van Oijen MGH, et al. Surveillance for hepatocellular carcinoma is associated with better survival: Results from a large cohort in the Netherlands. J Hepatol 2015;63:1156–1163. [2] van Meer S, de Man RA, van Erpecum KJ. Reply to ‘‘Surveillance for hepatocellular carcinoma: A tale of two countries”. J Hepatol 2016;64:755–756. [3] EASL-EORTC clinical practice guidelines: Management of hepatocellular carcinoma. J Hepatol 2012;56:908–943. [4] Lederle FA, Pocha C. Screening for liver cancer: the rush to judgment. Ann Intern Med 2012;156:387–389. [5] Davila JA, Morgan RO, Richardson PA, Du XL, McGlynn KA, El-Serag HB. Use of surveillance for hepatocellular carcinoma among patients with cirrhosis in the United States. Hepatology 2010;52:132–141. [6] Singal AG, Volk ML, Rakoski MO, Fu S, Su GL, McCurdy H, et al. Patient involvement in healthcare is associated with higher rates of surveillance for hepatocellular carcinoma. J Clin Gastroenterol 2011;45:727–732. [7] Biller-Andorno N, Juni P. Abolishing mammography screening programs? A view from the Swiss Medical Board. N Engl J Med 2014;370:1965–1967. [8] Singal AG, 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;11 e1001624. [9] Zhang BH, Yang BH, Tang ZY. Randomized controlled trial of screening for hepatocellular carcinoma. J Cancer Res Clin Oncol 2004;130:417–422. [10] Aberra FB, Essenmacher M, Fisher N, Volk ML. Measures quality improvement lead to higher rates surveillance hepatocellular carcinoma in patients with cirrhosis. Dig Dis Sci 2013;58:1157–1160.
S. van Meer1 F.I. Lieveld1,2 ⇑ K.J. van Erpecum1, 1 Department of Gastroenterology and Hepatology, University Medical Center Utrecht, Utrecht, The Netherlands 2 Department of Internal Medicine and Infectious Diseases, University Medical Center Utrecht, Utrecht, The Netherlands ⇑ Corresponding author. Address: Department of Gastroenterology and Hepatology, University Medical Center Utrecht, Po BOX 85500, 3508 GA Utrecht, The Netherlands. Tel.: +31 88 7557004. E-mail address: [email protected]
Journal of Hepatology 2016 vol. 65 j 645–654
⇑
JOURNAL OF HEPATOLOGY
Corresponding author. Address: 585 University Avenue, 13NU-1314, Toronto M5G 2N2, Canada. Tel.: +1 (416) 340 4800x8763; fax: +1 (416) 340 4890. E-mail address: [email protected]
Alice Tseng David K. Wong Immunodeficiency Clinic, University Health Network, Toronto, Canada
Patients’ misconceptions about surveillance for hepatocellular carcinoma: Education is needed 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 P40% of HCC cases detected without surveillance (Fig. 1F). Furthermore, many patients believed that surveillance reduces the risk of HCC deaths by P70% (Fig. 1G). Unfortunately,
A
B 100
80
80
D
100
100
80
80
Yes No No answer
# 60
60
40
40
40
20
20
20
0
0
60 #
50
F
50
40
60 #
0 #
40 20
G
50
40
40
30
30
30
20
20
20
10
10
10
0
0
0
0
#
#
H ar ± dly 4 ± 0% 70 U ±9 % nk 0 no % w n
Proportion of patients (in %)
E
C
#
± 2 ± 0% 4 ± 0% 6 U ± 80% nk 0 no % w n
Proportion of patients (in %)
100
± 2 ± 0% 40 ± % 60 U ±8 % nk 0 no % w n
To the Editor: In follow-up of recent publications in the Journal of Hepatology [1,2], we would like to discuss patients’ expectations of hepatocellular carcinoma (HCC) surveillance. Regular surveillance of high-risk patients is recommended by international guidelines [3]. 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]. 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]. Also in the Netherlands, only 27% of patients underwent surveillance before HCC diagnosis [1]. 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]. Patient knowledge and involvement in decision-making are associated with higher HCC surveillance rates [6]. 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]. 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
Fig. 1. Patients’ perceptions of HCC surveillance. (A) The goal of surveillance is to prevent liver cancer development. (B) The goal of surveillance is to detect liver cancer in early stage when curative treatment is still possible. (C) Abdominal ultrasound always detects liver cancer if present; (D) Surveillance for liver cancer is only necessary if patients have complaints; (E) When HCC is detected by surveillance, curative treatment is still possible in ± 20%, 40%, 60% or 80%. (F) When HCC is detected in patients without surveillance, curative treatment is still possible in ± 20%, 40%, 60% or 80%; (G) By performing surveillance with abdominal ultrasound at a 6-month interval, the 5-year mortality of HCC patients is reduced: hardly, with ± 40%, 70% or 90%. Correct answers are marked with # symbol.
Journal of Hepatology 2016 vol. 65 j 645–654
653
Letters to the Editor based on current literature, numbers are less positive: curative treatment is possible in approximately 20% of HCC patients diagnosed without surveillance in Western countries [1,8]. 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]. However, several aspects of this study have been criticized [4]. 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]. 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].
Conflict of interest The authors declared that they do not have anything to disclose regarding funding or conflict of interest with respect to this manuscript.
Author’s contributions Van Meer S, Lieveld FI and van Erpecum KJ designed the study, collected patient data and wrote the manuscript; van Erpecum
654
KJ supervised the manuscript. All authors approved the final version of the manuscript. References [1] van Meer S, de Man RA, Coenraad M, Sprengers D, Van Nieuwkerk CMJ, van Oijen MGH, et al. Surveillance for hepatocellular carcinoma is associated with better survival: Results from a large cohort in the Netherlands. J Hepatol 2015;63:1156–1163. [2] van Meer S, de Man RA, van Erpecum KJ. Reply to ‘‘Surveillance for hepatocellular carcinoma: A tale of two countries”. J Hepatol 2016;64:755–756. [3] EASL-EORTC clinical practice guidelines: Management of hepatocellular carcinoma. J Hepatol 2012;56:908–943. [4] Lederle FA, Pocha C. Screening for liver cancer: the rush to judgment. Ann Intern Med 2012;156:387–389. [5] Davila JA, Morgan RO, Richardson PA, Du XL, McGlynn KA, El-Serag HB. Use of surveillance for hepatocellular carcinoma among patients with cirrhosis in the United States. Hepatology 2010;52:132–141. [6] Singal AG, Volk ML, Rakoski MO, Fu S, Su GL, McCurdy H, et al. Patient involvement in healthcare is associated with higher rates of surveillance for hepatocellular carcinoma. J Clin Gastroenterol 2011;45:727–732. [7] Biller-Andorno N, Juni P. Abolishing mammography screening programs? A view from the Swiss Medical Board. N Engl J Med 2014;370:1965–1967. [8] Singal AG, 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;11 e1001624. [9] Zhang BH, Yang BH, Tang ZY. Randomized controlled trial of screening for hepatocellular carcinoma. J Cancer Res Clin Oncol 2004;130:417–422. [10] Aberra FB, Essenmacher M, Fisher N, Volk ML. Measures quality improvement lead to higher rates surveillance hepatocellular carcinoma in patients with cirrhosis. Dig Dis Sci 2013;58:1157–1160.
S. van Meer1 F.I. Lieveld1,2 ⇑ K.J. van Erpecum1, 1 Department of Gastroenterology and Hepatology, University Medical Center Utrecht, Utrecht, The Netherlands 2 Department of Internal Medicine and Infectious Diseases, University Medical Center Utrecht, Utrecht, The Netherlands ⇑ Corresponding author. Address: Department of Gastroenterology and Hepatology, University Medical Center Utrecht, Po BOX 85500, 3508 GA Utrecht, The Netherlands. Tel.: +31 88 7557004. E-mail address: [email protected]
Journal of Hepatology 2016 vol. 65 j 645–654