Perceptions and patient care needs among hepatitis B patients during COVID-19

The novel coronavirus of 2019 (COVID-19) has been and continues to be a rapidly developing global public health crisis. What initially presented as primarily a respiratory virus with a high mortality rate, has more recently come to be understood to be a systemic disease that causes inflammation and cellular death in many parts of the body, leading in some cases to long-term impact and suffering [1‐3]. Several underlying conditions contribute to an increased risk for long-term COVID-related complications, including advanced age (even for healthy elders), obesity (even for healthy individuals), cancer, chronic kidney disease, chronic lung diseases, neurological conditions (e.g., dementia, Alzheimer’s), diabetes, Down syndrome, heart conditions, HIV infection, otherwise immunocompromised, chronic liver diseases (including hepatitis B virus (HBV)), pregnancy/recently pregnant, sickle cell disease and thalassemia, smoking or having smoked, organ or blood transfer recipient, having survived a stroke or cerebrovascular disease, and substance use disorders. We also know that having an underlying condition that is not well controlled puts one at a higher risk than if it is well-managed [4, 5], and that some of these conditions tend to come in clusters (a syndemic) including HBV, often presenting with HIV and substance use disorders [6]. People with one or more of these conditions are at significantly increased risk of hospitalization, intubation, and mortality if they contract COVID-19.

Many of these underlying conditions are disproportionately distributed among marginalized and minority communities, putting already economically vulnerable populations at greater risk [7, 8]. Globally, COVID-19 has increased disparities, both directly and through disruptions to health care and other necessary services [9]. Across the United States (U.S.), among the COVID-19 reporting that includes race/ethnicity, we see that people of color are significantly more likely to die of COVID-19 than white patients [10, 11]. Black or African American patients have died at a rate of 174 per 100,000 (as of March 7, 2021), compared to 124 per 100,000 white patients. In the District of Columbia, while Black or African American individuals represent 46% of the population and 49% of the cases, they represented 76% of the deaths, compared to white individuals who comprise 41% of the district’s population, and 10% of the deaths [11].

In the case of HBV as an underlying condition, we also see disparities. Globally, particularly in low- and middle-income countries, where we see significantly higher burden of disease in parts of Africa and Asia, COVID-19 has caused disruptions to already vulnerable efforts to detect, prevent, and treat HBV [12]. Domestically in the U.S., until very recently, non-Hispanic Asian and Black populations were among the most impacted by HBV [13]. A significant effort has been made to vaccinate (particularly infants and small children), and screen pregnant people (to avoid parent/infant transmission), which has greatly decreased the HBV rates across the country over the last 20 years. However, screening for the virus among adults is suboptimal [14]. While non-Hispanic Black and non-Hispanic white folks are reported to have HBV in similar rates (1.0 per 100,000 population), mortality from it is not equal. Non-Hispanic Black men die from it at a rate of 2.7 per 100,000 with the disease, compared to 1.6 per 100,000 of non-Hispanic white men. Non-Hispanic Black women die at a rate of 1.0 per 100,000, compared to non-Hispanic white women 0.9 per 100,000 [15]. (Does not report on mortality for Asians or other races.) As higher mortality suggests the disease is not under control, this suggests that there is work to be done in supporting better management of the disease generally, and that this is urgently needed in the context of COVID-19’s increased risks.

To compound this increased urgency in need, when COVID-19 first overtook the U.S. in March 2020, most non-urgent medical care (as well as other activities) were temporarily suspended [16, 17]. As of June, 2020, an estimated 41% of U.S. adults had delayed or avoided medical care, both routine and emergency [18]. As management of chronic conditions requires regular and consistent medical care, there is concern that this interruption, as crucial as it was, may have negatively impacted at-risk populations. As new variants of COVID-19 emerge, and infectious disease experts continue to warn that another pandemic is probable [19‐22], there is a risk of repeated interruptions to care. Thus, it is important that HBV patients be prepared for all situations, including limited access to necessities. To make sure patients are sufficiently prepared, it is important to understand their starting point. This study utilized a regular patient outreach communication channel during the early months of COVID-19 in the United States (March through May of 2020) to explore preparedness for managing their HBV condition within the COVID-19 pandemic context, and their understanding of and ability to manage their COVID-19 risk level.

Based on the call notes, five thematic categories emerged (Table 2):

The study reported here explored the needs of patients affected with Hepatitis B virus during the early months of the COVID-19 pandemic. The following five themes emerged from exploratory analysis of the qualitative interviews from 44 participants: 1) awareness of COVID-19 protective measures, 2) access to assistance programs offered, 3) access to medical resources, 4) access to knowledge and information about assistance programs, and 5) needs and barriers.

Participants were aware and reminded of precautions to stay safe from COVID-19 due to their increased risk for complications with positive Hepatitis B virus infection status. During routine outreach from HBI-DC staff, participants were informed of assistance programs, such as school food programs; medical support including ensuring continuation of medication as prescribed and providing guidance for telehealth with a provider as needed; and transportation services for medical care. In terms of medical resources available for participants, while some were able to receive screenings and blood tests as necessary, some procedures were cancelled due to prioritization of care for patients directly affected by COVID-19. Similarly, participants described varied access to healthcare facility and appointments that were reassigned to a different provider or cancelled due to COVID-19. Information about assistance programs for food, utilities, unemployment, financial support, and transportation were provided to participants who were not aware of the resources available for them. Assistance with medical follow-up appointments and emphasis on adherence to prescribed medication regimen was provided for those having a hard time getting access to care due to COVID-19. Some participants described barriers to medication access due to financial hardship and not receiving necessary information or medical advice about their hepatitis diagnosis due to COVID-19.

Most participants expressed a strong need for assistance, and challenging barriers to accessing care and basic necessities (e.g., food, transportation), as well as insufficient knowledge about medical and assistance programs. It is important to highlight that all 44 participants were of Asian, Pacific Island, or African descent. Kardashian, et al., (2021) emphasize social determinants of health and heightened liver disease disparities during COVID-19 [29]. Racial and ethnic minorities as well as non-U.S. born foreign nationals are most often affected by chronic liver disease and related adverse outcomes [29]. Upstream determinants of health, such as social distancing measures, as well as personal financial hardship due to unemployment following COVID-19, made it difficult for many to access health care. Kardashian et al. (2021) highlight the impact of COVID-19 on liver disease disparities especially for those experiencing low-income, food insecurity, delays in treatment and screening, limited availability of community support groups, loss of a job and/or health insurance, homelessness, as well as systematic racism and bias [29]. Due to an increased risk for adverse outcomes from COVID-19, and vulnerability to COVID-19 infection for those already affected by hepatitis infection, people were compromising other health-related choices, including being less willing to go grocery shopping which increased food insecurity, and delaying health care [29]. It is also important to highlight that 70.5% of the participants reported not having insurance and 79.5% reported not having a PCP. Kardashian et al., (2021) report that racial and ethnic minorities who were already experiencing poverty prior to COVID-19 had experienced a lack of support (e.g., social network, community assistant programs), medication shortage, and access to health care due to unemployment and financial hardship [29]. Our study explored many of the same questions that theirs did and found many of the same emergent themes in data collection from communities with multiple layers of vulnerability.

Based on the needs highlighted from our study, as well as the literature, future recommendations include:

The strengths of the study reported here are that we were able to collect qualitative exploratory data from 44 individuals affected by hepatitis infection via a community partner outreach communication channel during the early part of 2020, when the COVID-19 began to emerge in the U.S. This allowed us to get an understanding of how COVID-19 was impacting the participants and their basic care needs during the that stage of the pandemic.

Some of the limitations of the study are that it is a relatively small study, consisting of 44 participants utilizing a single community health organization in the Washington D.C. area. There were only participants of Asian, Pacific Island, or African descent, excluding Hispanics who are also largely affected by liver diseases [29]. Future studies should consider exploring experiences of other racial and ethnic minority groups including Hispanics, as well as gathering information from community health centers across the U.S., and longitudinal studies to capture the needs and barriers of patients affected by hepatitis infection during a pandemic that now has affected people worldwide for almost 2 years.

This current exploratory qualitative study examined the needs and preparedness of patients at a community health organization that specifically provides HBV care for high-risk groups that had previously tested positive for HBV. From the notes of the calls, health care providers can develop strategies to better prepare their patients and provide care to their patients during major disruptions. Needs-related themes that emerged in this study indicate potential solutions (see Fig. 4.) For example, patients being unclear on COVID-19 protective measures suggest that the relevant public health messages were not reaching their communities at that time. Patients needed access to assistance programs and medical resources, even knowledge of existing assistance programs related to their specific needs. Providing that information, and supporting patients accessing those resources are indicated. Within the theme of needs and barriers, each patient had different challenges, suggesting the need for one-on-one strategizing to help patients overcome those barriers. The role of follow up in discovering these barriers and needs was also highlighted.

Due to the novelty of the COVID-19 global pandemic, in early 2020, health care providers found themselves needing to pivot their care delivery models and priorities without precedence and limited guidance. At the time of publication two years later, there is still very limited published guidance on how best to provide support for patients with chronic conditions during a public health crisis. In looking at the impact of COVID-19 on diabetes patients, another chronic condition associated with increased risks and similar maintenance needs, suggested recommendations are similar to the ones found in this study. These include clear guidance communication, continuity of care, and access to services and resources [30]. Our recommendations are in alignment with the US Department of Health and Human Services Viral Hepatitis National Strategic Plan’s recommendations in light of COVID-19, to address the added barriers to care that are faced by communities that shoulder a disproportionate share of the disease burden by addressing informational and resource access deficiencies [6].