A qualitative study of perceived barriers to hepatitis C care among people who did not attend appointments in the non-urban US South

Abstract

Background Most people diagnosed with hepatitis C virus (HCV) have not linked to care, despite the availability of safe and effective treatment. We aimed to understand why people diagnosed with HCV have not pursued care in the non-urban Southern United States. Methods We conducted a survey and semi-structured interview with participants referred to an HCV clinic who did not attend an appointment between 2014 and 2018. Our clinic is located in a non-urban region of Virginia at a university hospital. Qualitative data collection was guided by the Health Belief Model (HBM). Data was analyzed using qualitative content analysis to identify key factors influencing patient perceptions regarding HCV and pursuit of care. Results Over half of previously referred patients (N = 200) could not be reached by phone. Eleven participants enrolled, including 7 men and 4 women. Based on survey responses, unreliable transportation, unstable housing, substance use, and lack of insurance were common. Participants demonstrated good knowledge of HCV disease, complications, and treatment. On qualitative analysis of semi-structured interviews, final themes emerged from within and between HBM constructs. Emerging themes influencing patient perceptions included (1) structural barriers, (2) stigma, (3) prior experiences of HCV disease and treatment, (4) discordance between the recognized severity of HCV and expected impacts on one’s own health, and (5) patient-provider relationship. Substance use was not identified to be a barrier to care. Conclusions Participants perceived individual and structural barriers to linking to care. A strong HCV knowledge base was not sufficient to motivate pursuit of care. Efforts to improve linkage to care must address barriers at multiple levels, and system-level changes are needed. As the majority of previously referred patients could not be contacted by phone, current approaches to patient engagement are not effective for reaching these populations. Expansion of HCV care to primary care settings with an established patient-provider relationship or co-located treatment within substance use treatment programs may serve to increase access to HCV treatment.

Integrating Management of Hepatitis C Infection into Primary Care: the Key to Hepatitis C Elimination Efforts

“…19 Public buy-in is exceptionally important for HCV elimination to be realized, as it has large effect on whether people choose to be tested and undergo treatment if indicated. 20 Furthermore, many high-risk patient groups do not regularly access health care in order to receive screening.…”

“…55 Medicaid restrictions in some states continue to create unnecessary barriers for patients to access DAA therapies. 20 For example, some states still limit HCV treatment only to patients with advanced fibrosis. 56,57 However, this appears to be improving.…”

“…However, despite relaxed regulations that allow nonspecialists to treat HCV, there is an insufficient number of providers who are willing or able to prescribe HCV treatment. 14,20,29,30,68 Surveys of U.S. medical workers have identified several major perceived barriers to primary care provider treatment of HCV: time commitment for educating themselves in HCV treatment algorithms as well as educating their patients in HCV screening and treatment when indicated as well as addressing insurance coverage and reimbursement for liver disease staging and DAA therapy, all complicated by limited clinical support. [70][71][72] Thus, to increase provider capacity for HCV care, short-course training is needed for primary care providers.…”

“…53,[96][97][98][99][100][101] However, treatment failure does occur, oftentimes due to treatment nonadherence, which can be due to many factors including food insecurity, housing insecurity, financial insecurity, illicit drug use, and untreated mental health disorders. 20,102,103 Studies have shown that addressing these psychosocial factors leads to improved medication compliance and increased HCV cure rates as indicated by sustained viral response (SVR) at 12 weeks post-treatment. 39,59,88,104,105 Thus, appraising a patient's readiness for treatment is important and consideration given to the additional clinic or community supports that could be leveraged to maximize adherence.…”

Knowledge of hepatitis C and awareness of reinfection risk among people who successfully completed direct acting antiviral therapy

“…The simplification of treatments may be significant for HCV knowledge as care is increasingly shifted to primary and community care settings and linkage to speciality care may be declining [ 16 ]. Therefore, patients’ education regarding HCV, including awareness of reinfection risk may be changing owing to reduced interactions with specialty health care providers or decreased health care exposure due to barriers complicating linkage to care in the DAA era, particularly among marginalized populations and people at higher risk of HCV reinfection [ 16 – 18 ].…”