Health literacy in patients with chronic hepatitis B attending a tertiary hospital in Melbourne: a questionnaire based survey

Hepatitis B virus (HBV) is one of the most common chronic infections affecting up to 350 million people worldwide [1]. It is the second most important known human carcinogen after tobacco [1, 2] and was estimated to have resulted in the deaths of 786,000 people in 2010 [3].

The prevalence of chronic hepatitis B (CHB) in Australia has been estimated at approximately 1% of the population, affecting over 218,000 individuals in 2011 [4]. The majority of these are migrants from endemic areas, or Aboriginal and Torres Strait Islander people.

It is estimated that the increasing CHB prevalence in Australia, predominantly attributable to migration, will result in a two to three fold increase in premature mortality from CHB-related liver cancer by 2017 [5, 6], with liver cancer now the fastest increasing cause of cancer deaths in Australians [7]. Early diagnosis and appropriate management mitigates negative outcomes, including reducing the risk of liver cancer [8, 9] and reversing cirrhosis [10].

Recent migrants from non- English speaking hepatitis B endemic countries may have low health literacy [11], which reduces their capacity to navigate the Australian health care system and is a barrier to comprehending concepts such as liver disease, viral transmission, and antiviral treatment. Combined with fear of stigma, complications and misconceptions, this can be stressful and debilitating [12] and results in suboptimal management for the individual and ongoing transmission to susceptible contacts [13].

Improving understanding of hepatitis B in priority populations and enhancing access to diagnosis and care are key recommendations of Australia’s Second National Hepatitis B Strategy 2014-2017 [14]. Regular monitoring including clinical reviews and appropriate investigations are essential for all people with CHB [15]. Reducing alcohol consumption [16] and smoking cessation also reduce progression to advanced liver disease [17], as does recognition of symptoms associated with disease progression. Those receiving antiviral treatment need to be aware of the potentially indefinite duration of treatment, and that non-adherence allows viral rebound and/or resistance leading to adverse health outcomes [18]. Initiatives to improve testing and vaccination for contacts, and increased monitoring, treatment and educational options for those infected, are essential for reducing the burden of CHB [15].

In light of the increasing burden of CHB in Australia, and the identified need to improve both engagement with and care delivery for people living with CHB, this study aimed to understand current patients’ knowledge and understanding of the transmission, complications and treatment of CHB, and to investigate factors associated with the degree of knowledge in these individuals, in order to guide improvements in clinical and educational initiatives for the growing number of Australians living with CHB.

A limited number of studies have been conducted into the knowledge of people living with CHB regarding their condition [20–22]. This is the largest Australian study to investigate knowledge of CHB among patients attending specialist outpatient clinics. The majority of study participants (93%) were born overseas (62% from Asia, 22% from Africa, 7% from Europe and 9% from Oceania) and had a family member also diagnosed with CHB. This validates observations that the predominant burden of CHB is experienced by migrants from endemic countries where perinatal and early childhood acquisition is common, resulting in multiple affected family members. It also emphasises the cultural diversity seen among individuals with CHB, and the consequential accommodation required by the health system [23]. Knowledge of the effects and risks associated with CHB was low in over half the participants, and there were major misconceptions regarding HBV transmission. There was significantly higher knowledge among individuals with a family member also diagnosed with CHB, and among patients routinely seeing the same doctor.

Important knowledge gaps were identified, for example, the majority of participants lacked understanding about the sequelae of CHB beyond its effect on the liver, with one answering that it affected the lungs. Although CHB is often asymptomatic, complications can occur, and patients should be aware of symptoms that could indicate progressive disease. Our findings contrast with a Malaysian study [24] where participants had a greater knowledge of symptoms such as jaundice and fatigue (55% and 54% respectively). However, unlike the present study, which used both open and closed questioning, the Malaysian study used only prompted yes/no questions, potentially limiting the comparability of these results.

The majority (89%) of participants were aware that HBV can be sexually transmitted, which is higher than the 79-80% reported in previous studies [24, 25]. Moreover, whereas only 6.8% of participants in the Malaysian study [24] knew that HBV was not spread by sharing food, 75% of patients questioned in the present study were aware of this. That HBV can be spread by sharing food and eating utensils is a common misconception, especially among Asian communities, where hepatitis A prevention strategies were promoted following outbreaks in China in 1988 [26]. As hepatitis A is spread via the faecal-oral route, prevention strategies included not sharing food or eating utensils, and this has since been confused with HBV transmission routes.

Over half of participants in our study believed HBV could be spread via kissing or mosquito bites, and 20% by breathing. Such misconceptions have been found by similar studies in other countries [27–31]. These misconceptions can have very deep and negative impacts on those affected, constituting an unnecessary and preventable burden. Dispelling these misconceptions is important for improving the quality of life of those infected [32, 33], and increasing awareness in the general community to reduce the stigma that arises from lack of knowledge.

Only four participants showed an understanding of the virus’s effect on the liver and how this related to their treatment status. During consultations terms such as viral load, and viral activity were commonly used, but we do not know if they were always understood by participants.

Some participants showed a passive approach towards their health, deferring to their doctor’s advice as their reason for treatment and appointment attendance. Passivity towards health has been correlated with low health literacy [34] and highlights the need for patient engagement as well as education, and this is particularly pertinent among recently arrived migrants who may have many competing priorities. It is important to note that the group interviewed represents those engaged with the healthcare system and attending specialist appointments. There are many individuals with CHB not engaged with the healthcare system, and more than 100,000 Australians estimated to be living with undiagnosed CHB [4], whose health literacy may be even lower.

The results of Questionnaire 1 suggest that patients are generally not provided with detailed information during ongoing monitoring of CHB. However, it is clear that some participants would benefit from repetition of important transmission and management information. While it could be assumed all participants were provided with extensive information upon diagnosis, it is possible that long-term retention of this information is not universal. Therefore, assumptions of knowledge may not be valid, irrespective of whether the cause is never having been provided with the information, or not recalling it.

Better knowledge was seen among those with a family member also diagnosed with CHB, possibly by providing a direct source of information following diagnosis. Having a relative with the same condition, especially if they have suffered the sequelae of liver dysfunction, may also promote communication, engagement, support and encouragement for regular monitoring [33]. Discussing the diagnosis with people sharing cultural and linguistic ties may also be conducive to better knowledge, although this could also be a source of the many myths regarding CHB infection [12]. Community-outreach programs based on providing culturally and linguistically salient information have been internationally recognised for effectively disseminating information among Hispanic/Latino communities in the United States [35].

Seeing the same the doctor has been shown to improve patient knowledge and management of chronic conditions such as asthma [35]. Our results validate this as positive associations with knowledge score were observed among patients having seen the clinician before (p = 0.02) and with increasing years seeing the same clinician (p = 0.003). A possible explanation is that with return visits, the treating clinician can incrementally educate the patient and reinforce previous discussions although more research in this area is needed. It also provides consistency and familiarity for the patient. This should be incorporated into clinical practice aimed at improving patient engagement with the healthcare system and reducing the number of patients lost to follow up.

During the study period, between 9%-31% of patients failed to attend their appointments (all clinic patients rather than only those with CHB). This provides an indication of the difficulty of monitoring and maintaining contact with patients who experience language barriers and may change residential address frequently. Wu et al [25] cited inconvenience as a significant barrier to healthcare access among 40% of participants with CHB, with after-hour clinics having higher attendance rates. The clinics in our study operated from 9 am-12.30 pm sometimes with considerable delays in seeing patients. The finding that the majority of patients stated that they did not feel comfortable disclosing the infection to their friends and colleagues highlights the potential difficulty of attending appointments during business hours.

This study had several limitations. As recruitment was from clinics based in a major Victorian hospital, it does not provide information about patients from other settings such as general practice or rural clinics. Our study group may also have had a slight bias towards those not using an interpreter, as on two occasions the interpreter was not able to complete the interview, preventing those patients from participating. Furthermore, patients attending these clinics are already engaged with the healthcare system, and may not be representative of the general population living with hepatitis B.

Patient acceptance of the research was high, with 55 of 58 invited agreeing to participate. However, with a number of variables assessed for impact on knowledge score, and considered for inclusion in multivariate analysis, this analysis may have lacked power to detect some factors truly associated with knowledge score (type II error).

As HBV prevalence and attributable liver cancer incidence increases in Australia and other developed countries, health service provisions for people with CHB will need to improve and expand, and should involve education and support for those chronically infected and their families. There are many HBV patient resources, both online and in print, available in a number of priority languages (for example http://www.hepbhelp.org.au). Liaison nurses and community self-management programs also exist to support and educate this group. These resources are currently underused and it was one intention of this research to provide results that challenge clinicians to aim for improved engagement and continued education of this patient group, especially for long-term patients. These results also highlight the need to educate patients regarding common misconceptions in addition to actual transmission routes. A better understanding of CHB will improve compliance and monitoring and may reduce the significant morbidity, anxiety and stress surrounding CHB infection.