Most patients in the HEPREACH cohort were overseas-born, and two‒fifths of patients transitioned through a refugee camp. Patients held many misconceptions related to VH transmission including sharing food, kissing, breathing and mosquitoes as potential transmission risk factors, but many did not realize the risks of transmission from identified risks. Country of hepatitis diagnosis, patient educational level, preferred language of communication, and having stayed in a refugee camp were associated with knowledge of VH.
While three‒fourths of patients were diagnosed with HBV, less than one‒in‒five were on treatment. Similarly, only 3 of the 18 persons diagnosed with HCV were treated. All patients with G4 HCV genotype were born outside Australia. Low treatment rates for both HCV and HBV represent a major deficiency of the health system’s ability to serve this community.
The ethnic diversity and casemix of HBV and HCV is representative of Australia’s VH epidemiology, which is strongly influenced by immigration from high‒to intermediate‒prevalence countries[4, 18]. Most migrant patients living with HBV or HCV were born in Vietnam, Liberia, Taiwan, and other countries in the Pacific and African regions, which were known to have a high prevalence of HBV[7]. The longer duration since HBV infection could be due to transitioning through the refugee camp, or other barriers to healthcare such as culture and language. Low levels of understanding of the risks of HCC and the need for regular screening may underlie the higher prevalence of HCC in migrant Australians with HBV, which can occur without progression to cirrhosis [Taye et al, 2019, unpublished].
The country of birth for patients with HCV G4 being outside of Australia (one case each from DR Congo and Sudan) is in line with studies that reported the genotypic distribution of HCV is markedly contributed to by immigration[5, 19]. The finding suggests the need for different treatment regimens that cover the varying genotypes, to achieve a high rate of treatment success and elimination targets[5, 20]. Social and cultural stigma in many migrant communities needs to be breached to better understand injection drug use as a major risk factor for HCV transmission. The presence of stigma and discrimination in the community harms the utilization of needle and syringe programs and the uptake of antiviral prophylaxis for the prevention of HBV mother to child transmission[21, 22]. Stigma and discrimination in persons with VH affect the possibility of early diagnosis, and treatment adherence, which may be associated with a presentation with advanced liver disease, increased hospital re-admissions, increased healthcare costs and higher mortality rates[23]. The low HCV treatment rate in this population may reflect access to care could be influenced by socio-economic, cultural and linguistic factors. A high treatment coverage and success rate in CALD populations is essential to reach HCV elimination targets, given the significant burden of HCV in people from CALD backgrounds[24].
This study is one of the few that investigated the health literacy of CALD communities about VH. We found the health literacy of migrant people with VH was limited by their educational level, having a history of being a refugee and with non‒English speaking language preference. Patients whose diagnosis had been provided before their migration‒either in their country of origin or a transit camp, had a significantly poorer understanding of VH. This may reflect more limited health care resources and expertise in their country of diagnosis, which itself may have been a transit country for the 40% of patients who were refugees.
Our study participants had a low median knowledge score and only two‒thirds of patients were able to describe that VH affects the liver. Without knowledge of the implications of VH, particularly hepatocellular carcinoma (HCC) in people of CALD backgrounds is limited and could have an impact on the screening for HCC and HBV treatment uptake[25]. Laboratory and radiologic evidence of cirrhosis and liver damage in these patients were common, indicating the need for early diagnosis and monitoring.
Although most patients acquired HBV vertically, a third of patients did not recognize perinatal transmission as a risk factor. This wide gap in knowledge of vertical transmission has a significant contribution to mother to child transmission of HBV to children born in Australia, making HBV a major health problem in people of CALD background. Expanding knowledge of VH is, therefore, a key element of the approaches to prevent transmission and accelerate elimination[24].
Many patients felt that sharing food, kissing, breathing, and mosquitoes transmit VH. The higher rate of misconceptions held by CALD populations reflects the presence of a wider knowledge gap that must be addressed during follow up visits to prevent the transmission of VH to other family members[9, 26, 27]. The high proportion of misconceptions in VH patients could contribute to poor diagnosis and treatment uptake rates and may increase patient lost‒to‒follow‒up.
Societal perspectives about viral hepatitis are variable depending on the education from healthcare providers[28]. Social networks determine the dynamics of transmission for VH and the related perceptions of having VH infections are related to differential treatment-seeking and health outcomes[29]. The disconnection between patient perspectives and experience and assumptions of healthcare providers has implications on the engagement of people living with VH[30]. The social attribution to having hepatitis among the community themselves is crucial to design the type and level of medical and psychosocial support for patients[28].
The knowledge of VH was associated with educational level, staying in a refugee camp and the country of diagnosis. Better access to information about VH and delivering patient education contributes to the positive behavior that prepares patients to contribute towards the prevention of hepatitis through vaccination, preventing vertical transmission or unsafe injections[31]. In the refugee camps, migrants may not have access to health information and were more likely to have lower health literacy scores, this implies the importance of viral hepatitis education and provision of access to health information in refugee camps to prevent infection in migrants and transmission to other communities at the destination country. Migrant people are at-risk group, targeted strategies need to include focused patient education about VH transmission and misconceptions.
While this is the largest study that assessed patient literacy to VH in people from CALD backgrounds in Australia, the generalizability of our findings could be limited by the small sample size and the fact that the study population was recruited from two clinics located in areas overpopulated with migrants. The study assessed health literacy in the context of Australia and different ways of understanding and terminologies that might have existed in the countries of birth were not included in the assessment. The duration of stay in Australia before VH diagnosis could not be established because of the variable country of diagnosis for participants. Despite what appear to be significant weaknesses in health literacy and poor treatment rates, it is likely that selection bias from this group of engaged patients understates the situation for many migrant people with viral hepatitis in the community. Nevertheless, this study identified a clear health literacy gap particularly in the areas of transmission and natural history, which can be used to design CALD-focused patient education strategies to reduce the number of new cases, increase treatment uptake, and reduce stigma and discrimination, pivotal to achieving the VH elimination targets.