‘We can bear it!’ Unpacking barriers to hepatocellular carcinoma screening among patients with hepatitis B: A qualitative study

Abstract

Aims and objectives To explore barriers to hepatocellular carcinoma screening among patients with hepatitis B. Background Hepatitis B‐related hepatocellular carcinoma is a major cause of cancer‐related mortality globally. A preventive strategy for screening is needed to improve early tumour detection and overall survival. However, utilisation remains suboptimal and barriers are understudied and largely focused on clinical factors. Design A qualitative study based on the preventive health model using phenomenological hermeneutical approach. Methods Face‐to‐face semi‐structured interviews were conducted with 23 hepatitis B patients from November 2020 to February 2021. Interpretative phenomenological analysis was used. The COREQ checklist was followed. Results Four themes were identified: (i) miscognition, (ii) cultural stigma and taboo, (iii) social norms of enduring hardship and (iv) social barriers at the community, health system and policy levels. Patients had misconceptions about inactive carriers, asymptomatic nature of chronic hepatitis B, hepatocellular carcinoma risks and screening recommendations. Influenced by the taboo of hepatocellular carcinoma, stigma against hepatitis B and enduring hardship norms, they perceived screening as divination, avoided utilisation to hide disease status and endured symptoms until they were intolerable. Insufficient community support, a lack of shared decision‐making in health systems, and inadequate rural reimbursement policy and hepatocellular carcinoma detection capacity further precluded utilisation. Conclusions Cognitive and sociocultural barriers precluded individuals’ intention, utilisation and persistence of hepatocellular carcinoma screening. The results highlight intervention targets for miscognition, stigma, taboo and social norms; propose family‐focused, community‐based education programs; suggest health systems to introduce decision aids; and inform policymaking and upskilling of physicians in rural areas. Relevance to clinical practice Collaborative efforts are needed to improve real‐world hepatocellular carcinoma screening, including education to address knowledge deficiencies, psychological counselling to reduce stigma and taboo beliefs, support for shared decision‐making and reimbursement policies.

Factors affecting the compliance of hepatocellular carcinoma screening among high‐risk populations: A systematic review and meta‐analysis

“…Knowledge and awareness were considered crucial elements for HCC screening. An increased understanding of risk factors and screening techniques led to a rise in the usage of screening (Cao et al., 2022; Cho et al., 2010; Noh et al., 2012; Wong et al., 2009; Xu et al., 2017) Furthermore, Xu K and Li C (Li et al., 2022; Xu et al., 2017) discovered that poor screening participation was connected to unawareness of the symptoms of HCC. Adherence to HCC screening was influenced by information of HCC progression.…”

“…Only 31.3% of individuals answered the question “Does hepatitis have to cause cirrhosis before developing HCC?” correctly (Xu et al., 2017). This mistaken belief that hepatitis must produce cirrhosis before developing HCC may have influenced screening behavior, as the non‐cirrhotic population believes that they have another stage to suffer before getting HCC (Li et al., 2022; Xu et al., 2017). Owing to their non‐cirrhotic status, they thought they were protected from HCC.…”

“…Owing to their non‐cirrhotic status, they thought they were protected from HCC. Surprisingly, three studies (Li et al., 2022; Noh et al., 2012; Xu et al., 2017) showed that one of the top barriers to receiving HCC screening was being ignorant of the existence of HCC screening. Not being aware of the expected benefits of screening would affect the intention to receive screening.…”

“…Quality score screening results (Li et al, 2022;Sood et al, 2022). To some extent, attitudes toward cancer would facilitate or hinder screening behavior in high-risk populations.…”

“…The high cost of screening programs was significantly related to decreasing the rate of screening. On the other hand, some individuals expressed they would not pay for HCC screening if there were no discomfort or symptoms, and even they think it was a waste of money (Li et al, 2022). According to the results of Farvardin et al (2017), about 1 in 4 individuals regarded the cost of screening as one major barrier to HCC surveillance.…”