CHB remains largely undiagnosed and untreated in many parts of the world. There are 2 million HBV infected people in the United States, of whom 70% may be unaware of their infection status [
9,
15]. Many individuals who are aware of their infections may not be accessing adequate care. Further, only about 10% of the CHB patients who could benefit from treatment are receiving antiviral medications [
9].
Efficacy of the hepatitis B campaign on LTC
During the past few decades, community-based hepatitis B campaigns have played an important role in educating and screening Asian American immigrants. Despite numerous such campaigns, however, studies directly examining their efficacy and sustainability with respect to LTC are lacking [
16‐
18]. Specifically, those found through screening campaigns to be HBV infected need to be assessed for adequate LTC. Secondly, the sustainability of LTC needs to be assessed. In addition, the factors that can potentially hinder access to adequate care need to be evaluated in order to improve LTC.
The current long-term follow-up study on the 97 HBV-infected participants from our community-based hepatitis B campaign demonstrated successful care linkage and engagement. In those 66 participants who have accessed care after the screening, we found that the rate of LTC increased as the length of the follow-up period increased: 46% in 2 years, 65% in 4 years, 78% in 6 years, and 86% in 8 years (Table
3). It should be also noted that a majority of the participants followed for longer than 2 years have seen physicians more than once. For instance, in group D, 7 of 21 participants saw physicians 4 times or more during the 6–8 year follow up period. These cumulative increases in LTC seen throughout the 8-year observation may reflect the efficacy of the continually ongoing hepatitis B education and screening efforts in this community.
Barriers to LTC
The continual monitoring and management of CHB patients are paramount in successful linkage in care of CHB. Although our study did not employ a control group, followed in the absence of a community campaign, the current and previous studies have demonstrated a significant lack of LTC in HBV infected patients [
6,
9,
11,
12,
18]. For instance, it was estimated that 40% of the HBV infected subjects screened in community settings were linked to care [
16,
17]. In another study involving 1231 HBV infected individuals, only 28% received additional laboratory evaluation after initial screening. [
19]. Another recent study involving 1168 CHB patients reported that only one-third of the untreated patients received laboratory monitoring of HBV DNA and ALT levels at least once a year during the follow up of 728 days [
20].
Given the significance of persistent monitoring in management of HBV infected patients, who can potentially put others at risk, determination of the long-term outcome of HBV screening is crucial from both individual and public health standpoints. Our finding that a majority of HBV infected participants were not engaged in any care post-diagnosis reflects a serious health access issue in immigrant and ethnic communities. It should be also stressed that in this study, despite the moderately successful outcome, as many as 31 (32%) of 97 individuals have yet to access care. Many barriers could have played important roles in this failure of adequate access. These include health insurance status, language, and other patient-related factors [
6,
10,
13,
21,
22]. The current study suggests that health insurance status played a significant role in these participants’ LTC and that uninsured individuals are more likely to delay access to care than those who are covered (Table
4). Although recent nationwide expansions in insurance coverage have improved access to health care, many still lack health insurance coverage [
23‐
25]. Further, the burden of additional expenses associated with health care utilization and borne by the individual often dissuades insureds from obtaining necessary care. The lack of knowledge of CHB and its impact on health may be another reason HBV-infected individuals avoid care, resulting in further decrease in LTC.
It has been shown in previous studies that, compared to English-proficient individuals, those with limited English proficiency had more difficulty gaining access to care [
26,
27]. We, therefore, assessed the impact of language proficiency on LTC outcome. As shown in Table
4, however, patients’ English language proficiency did not appear to affect access to care in this study. These findings are congruent with the fact that the participants could find providers in the community who could speak their languages. Furthermore, family history of CHB was not associated with the rate of LTC.
In evaluating the reasons hindering LTC in the 31 participants who failed to access care, we found that the lack of health insurance was the predominant barrier (Table
5). These findings are consistent with the results of other studies that demonstrated that lack of health insurance is a major barrier in CHB care access [
18,
23,
25].
Owing to the absence of symptoms and a lack of knowledge of the value of continual monitoring and possible treatment of hepatitis B, 9 of the 31 participants were not accessing care. This finding suggests that these individuals were not aware that CHB can persist, resulting in cirrhosis and/or cancer, often without obvious symptoms. These observations further point to the lack of CHB literacy. Health literacy has been directly associated with healthcare utilization [
28,
29]. Thus, increasing health literacy may help improve patients’ understanding of the need for LTC, and that understanding will, in turn, lead to higher demand for access to care and thus for health insurance. Further, a patient navigator program, which has been shown to enhance access to care in hepatitis B [
12,
29,
30], may be implemented to further facilitate LTC efforts.
The vigor of the search for healthcare can depend on the extent of disease in each participant, which may thus have affected the LTC in the current study. In other words, the more severe a participant’s disease, and the more he is aware of any symptom related to CHB, the more likely he may be to seek out medical care. In the absence of data on the extent of diseases in these participants, the current study does not allow us to define a true relationship between the degree of disease activity and the rate at which subjects seek medical advice.
Self-awareness of HBV infection
It was reported in 2016 that among 257 million people worldwide chronically infected with HBV, only 27 million (10.5%) were aware of their infections [
31]. Although it is noteworthy in the current study that a large proportion (76%) of the 97 HBV infected participants had previous knowledge of their infection status (Table
2), this high proportion may be an overestimate attributable to sampling. Specifically, it should be noted that the total number of infected people includes both those who are aware and those who are not aware of their infection status. Those who are aware fall into two groups: those who are currently in care (i.e., linked) and those who are not. Since those who are aware and linked did not participate in the campaign, we may be dealing with two groups: those who are aware but not linked and those who are not aware of their infection status (e.g., first-time finders). Thus, our finding that 76% of the 97 participants knew of their infections status may overestimate the true percentage of the infected people with such previous knowledge. Many of the participants aware of their infections but not in care might want to take advantage of repeat screening, thereby participating in the campaign. All these factors may also in turn end up underestimating the true percentage of the HBV infected individuals who are not aware of their infection status.
Limitations
There are several important limitations in this study. First, the participants in the current study, consisting of 97 HBV-infected individuals, may not be representative of Korean Americans chronically infected with HBV overall. For instance, education, health and socioeconomic status of participants, all of which are important in predicting patients’ access to health care, have not been accounted for in the current study. Future studies with a larger sample accounting for participants’ health literacy and socioeconomic status would help to confirm clarify these results. Second, there may be issues with randomness of sampling as discussed above. More people with self-awareness, who are not currently seeing physicians, may have participated in the campaign as compared to those who were unaware. This would result in erroneously raising the proportion of self-aware participants relative to those who were unaware of infection. Third, there are important issues with the definition of LTC we have employed and the varying lengths of follow-up periods in this study. We have considered participants to be linked to care if they had at least one visit to a physician that included HBV DNA, ALT, and liver sonogram. This apparently has increased the percentage of linkage as the follow-up interval increased. Although some participants had visited physicians periodically once a year, many others visited randomly once every few years. Since long-term engagement for a continuum of periodic monitoring and care is critical in the care of HBV-infected individuals, some of those participants who had visited physicians less frequently than once every other year, for instance, may not be considered as accessing care as frequently as others who had visited physicians once a year. Further, while periodic assessments of ALT, DNA, and liver sonograms are essential in LTC, we have not evaluated whether each participant was regularly so tested during the follow-up periods. Lastly, we have investigated only a limited list of barriers affecting access to care: health insurance status, language, time, and knowledge of hepatitis B. The sample size is small, and more studies involving a larger number of subjects are needed to assess more accurately the interaction between and among these barriers as well as the role of other additional factors that can affect participants’ access to care in high risk populations.