Leveraging a community-based participatory approach to improve linkage to care for HBV.

INTRODUCTION There are 2.2 million individuals living with chronic hepatitis B (HBV) in the US, and the majority are born in regions outside of the US such as Asia (58%) and Africa (11%).1 The HBV Care Cascade [testing, linkage to care (LTC), treatment uptake, treatment adherence, and viral suppression]2 are the chronologic stages of patients receiving HBV-related health care with the goal of viral suppression. Incidence of new infections are increasing in certain areas3 but significant gaps in the HBV care continuum2 remain. Data has demonstrated significant gaps in the LTC portion of the HBV cascade.4–8 Based on epidemiologic studies from Ontario, Canada,4 and the US,5–8 less than one third of individuals living with HBV are aware of their condition or have been diagnosed. Of those, only a fraction (36%–58%) have been linked to care or are engaged in regular care for their HBV.2–4 LTC is the crucial step of referring patients to chronic HBV care (ie, primary care provider proficient in HBV monitoring protocols, specialists for antiviral treatment, etc.) and ensuring they receive treatment and adhere to chronic HBV monitoring guidelines.9 LTC following HBV diagnosis is a critical window that can help guide decisions regarding treatment, HCC surveillance, risk counseling, and vaccination of potential household contacts.9,10 The objective of this paper is to review the current known barriers to LTC for patients with chronic HBV and suggest potential solutions based on themes of previously successful LTC models. BARRIERS TO HBV LTC Known barriers to HBV LTC include sociocultural and linguistic factors (ie, stigma, provider-patient language discordance, etc.), limited health literacy, inadequate provider-to-patient education, and navigation of insurance health care landscape.4,11–13 Stigma plays a crucial role in why patients initially refuse or would rather not seek care.11 This can involve fears of losing employment, losing insurance, and increasing the burden of treatment on the family.14,15 Language discordance and limited acculturation to Western society can also manifest as mistrust in the health care system11,13 and hinder patient understanding of the importance of routine HCC surveillance and laboratory monitoring.4,11,12 For instance, one study consisting of patients primarily from immigrant communities reported that 20% of HBV patients did not believe HBV was a treatable disease, and only 47.7% believed they could develop any liver complications or transmit HBV to others during their lifetime.14 Health care navigation and insurance were the most commonly cited barriers across all studies.4,11,12 Many hypothesize that delayed specialist referrals, lack of standardized referral systems, complex health care navigation, and underinsured coverage likely contribute to the poor rates of LTC and retention.12 REVIEW OF SUCCESSFUL STRATEGIES THAT ADDRESS BARRIERS TO LTC The Community-Based Participatory Approach (CBPA) model outlines an ideal approach to approaching HBV LTC,16 and includes the formation of a community advisory board (consisting of health care professionals and community members), in partnership with community-based organizations (CBOs), performing a community needs assessment, development of culturally sensitive HBV interventions, and finally, implementation,16 as illustrated in Figure 1. Several important strategies have stemmed from this framework, starting with partnering with CBOs. With regards to implementation, utilization of multilingual staff, development of robust referral systems, and training of patient navigators are common themes.FIGURE 1: Community-based participatory research approach adapted from Ma et al.16As difficulty with health care navigation is a universal theme that hinders HBV LTC, potential solutions have involved multiple components that often center around the creation of standardized referral protocols and the use of patient navigators, as outlined in Table 1. After finding patients who are uninsured and/or not plugged into care, CBOs can assist with referring patients to providers who are culturally competent and trusted in respective ethnic communities. CBOs can also help recruit community-based health care workers to be trained as patient navigators.17–20 In a study by Chandrasekar and colleagues, contact information for a patient navigator was placed on letters notifying patients of their HBV-positive status. After being contacted, the navigator would then help the patient make an appointment based on their respective insurance.18 Other roles of navigators ranged from informing and counseling patients of their test results, providing and emphasizing educational resources for HBV, and addressing general questions about insurance and HBV.17,20,21 TABLE 1 - Summary of barriers and potential solutions Community-based organizations Development of culturally sensitive resources Patient navigators Sociocultural (ie, stigma) and linguistic barriers Help with identifying culturally appropriate venues for dissemination of education on the importance of HBV monitoring and debunk stigmaCrucial to help identify uninsured patients/who have not seen providers prior Creation of referral list of trusted providers and/or FQHCs that patient can receive care fromPromotion of such educational resources at high-impact venues (as identified by community-based organizations) Provide counseling and address concerns regarding stigma and access to care in preferred language Limited health literacy and insufficient counseling Provide information/resources from clinicians on appropriate screening and monitoring for HBV Development of curriculum for patient navigators to understand general HBV and HCV disease, and the importance of monitoring Educate on basic HBV disease pathology and the importance to seek care if chronically infectedDefer all clinically specific questions to licensed providers Health care navigation Integral in helping develop robust referral systems in partnership with HBV initiativesHelped recruit multilingual patient navigatorsServed as a contact for many patients, provider assistance with transportation and linkage to patient navigators Development of curriculum for patient navigators to understand the general health landscape (private vs. public insurance), whom to refer for uninsured etc.Development of resource list for commonly asked questions (ie, insurance-related claims, how to enroll, changing assigned HMO providers, etc.) With resource maps, can help refer to appropriate provider based of language, zip code, and insuranceCan help make appointments and arrange transportationWith constraints of scope, refer to appropriate resources with reference to the centralized resource database Abbreviations: FQHC, Federally Qualified Health Center; HMO, Health Maintenance Organization. Utilizing multilingual staff is one strategy for addressing sociocultural and linguistic barriers as well as limited health literacy. In 2 studies, multilingual health care providers provided education surrounding HBV diagnoses and HCC surveillance during screening events, which effectively helped reduce common HBV misconceptions.17,21 In partnership with CBOs, they have also been used to identify culturally appropriate venues, such as media outlets (eg, radio, television, etc.) and cultural events, to disseminate high-quality information.13,17,19,21 For patients who were receiving explanations of their HBV screening results, multilingual staff have provided timely counseling and have mailed letters in patients’ respective languages with explanations, along with contact information for further questions.18,21 Hyun et al22 showed that providing tailored HBV education for a Korean community, which featured over 128 HBV screening and seminars over an 8-year period, increased retention in care. HEPATITIS LINKAGE PROJECT At the David Geffen School of Medicine—University of California Los Angeles (UCLA), a grassroot, medical student–led initiative developed an LTC model through partnership with Asian Pacific Liver Center in Los Angeles and a Federally Qualified Health Center (FQHC). Multilingual UCLA undergraduates were recruited and trained with a curriculum as outlined in Figure 2. The classes were taught by licensed health care professionals and medical students with experience with viral hepatitis. With the FQHC, a resource map of primary and specialty clinics was developed with contracted insurances, the language(s) spoken, and location. HBV-positive patients were retrospectively called, counseled on their positive test results, and linked to care.FIGURE 2: Development of the first cohort of hepatitis linkage counselors. Abbreviations: FQHC, Federally Qualified Health Center; HIPAA, Health Insurance Portability and Accountability Act; HLP, Hepatitis Linkage Project; HMO, Health Maintenance Organization; PPO, preferred provider organization; UCLA, University of California Los Angeles.Data was collected during our pilot implementation from June 2017 to July 2017 of which 40 patients were contacted by phone (Table 2). Most were Vietnamese-speaking (18/40, 45%) and Chinese-speaking (including Mandarin and Cantonese) (16/40, 40%). Of all patients contacted, 85% agreed to receive education, which included information on the importance of HBV screening and vaccination for family members, seeking treatment, adhering to treatment, HCC surveillance, and treatment monitoring. Of this group, 6 patients (8.2%) had reported never previously receiving any information about their diagnosis or HBV-related care (ie, treatment, HCC monitoring, etc.). By the end of the call, all 6 patients were interested in seeking care and were referred based on their insurance and respective language preference, but we were unable to ascertain whether they did so successfully. Client receptiveness of phone call by a navigator was high (4.4 on a scale of 1–5). This medical student–led HBV LTC mode was feasible and was able to continue to work in conjunction with the FQHC’s screening efforts. TABLE 2 - Pilot implementation of the Hepatitis Linkage Project (HLP) June 2017–July 2017 Patient characteristics Total patients with HBV (N = 40) [n (%)] Sex Male 18 (45) Female 22 (55) Age (average) (y) 62.1 Languages Vietnamese 18 (45) Chinese 16 (40) Korean 5 (12) English 1 (3) Mean time from screening to call (y) 1.23 HLP counselor’s rating of client’s receptiveness to education (scale 1–5) 4.4 Success rate of educating the client on screening familya 81.4 Success rate of educating the client on treatment and importance of monitoringa 84.1 aSuccess was defined as a patient consenting to receiving HBV education and specifically, the importance of encouraging family to also be screened and adhering to antiviral treatment (if applicable), laboratory monitoring, and ultrasound screening. CONCLUSIONS Our literature review and experience have shown that several elements of a community-based participatory research model can be applied for HBV LTC successfully, including partnering with CBOs and implementation components, such as using multilingual staff, creating standardized referral protocols to providers, and using patient navigators. We highlighted our successful pilot experience at the UCLA Hepatitis Linkage Project (Pictures 1 and 2). More investments are needed by clinicians to develop such partnerships, perform their own needs assessments, and implement programs, particularly in high-risk communities.16,23 Future directions on creating effective LTC models for HBV include more robust testing of models, follow-up appointment attendance rates, and the development of initiatives focused on long-term adherence to medications and HCC surveillance.PICTURE 1: Pilot program hepatitis patient navigators being educated on HBV general pathophysiology, importance of monitoring, and the cruciality of linkage to care.PICTURE 2: Pilot program of hepatitis patient navigator educating on HCV pathophysiology and epidemiology.