In this population of patients who have been diagnosed with HCV and referred to specialty care but who have not successfully linked to care, we identified themes that influenced patient decision making using the HBM as a framework. Our patients were aware of their diagnosis and had high levels of HCV knowledge, yet they noted multiple, complicated, and varied factors leading to the behavior of not seeking care. Dominant themes included ambivalence regarding the impact of HCV on self, presence of logistical barriers, impact of substance use and stigma, the influence of patient-provider relationships, and the prior lived experiences of self and others with HCV. [Table 3]
Table 3
Barriers and facilitators of linkage to Hepatitis C care with suggested interventions to improve care based on qualitative patient interviews.
Major Themes | Interventions to Improve Care |
Logistical Barriers: Financial, Scheduling, Transportation, Health-system level | Expand Medicaid; Utilize pharmaceutical company drug assistance programs; Educate patients on available resources and supportive care; Aim for clinic responsiveness, ease of scheduling, and confidentiality |
Patient-Provider Relationship | Encourage expansion of HCV treatment to where patients are already receiving care and have established relationships |
Ambivalence | Acknowledge and address the uncertainty related to having HCV; Focus patient education campaigns on ambivalence and the potential for treatment to relieve patients of the burden of uncertainty |
Substance Use and Stigma | Provide education on harm reduction strategies; Co-locate treatment for substance use disorder and HCV; Educate clinic staff on creating a welcoming atmosphere |
Prior Lived Experience of HCV | Explore patients’ or others’ prior experiences with HCV treatment; Address favorable changes in treatment since earlier therapies |
Inability to Contact Referred Patients | Consider alternative methods to reach patients and increase access to HCV specialty care, including providing phones for the course of HCV treatment to ensure stable contact |
Abbreviations: HCV = Hepatitis C virus |
Ambivalence emerged as the most notable theme related to perceived severity. Ambivalence takes the form of people knowing that HCV is a serious illness, while also feeling that their own health has not been impacted by HCV. People living with HCV experience a sense of “sustained uncertainty” (26). This uncertainty can relate to the potential development of complications at an unknown future date, misinformation, or lack of knowledge regarding HCV (26,27). While DAAs have drastically improved the effectiveness and ease of treatment, this new era of treatment may not be influencing established patient narratives of HCV illness, limiting the uptake of new treatments (28). To reach these patients, it may be helpful to highlight improvements in patient related outcomes with HCV cure (2). The most significant impact of HCV cure may be an improved sense of psychological wellbeing related to relief about no longer living with the burden of an uncertain future or the fear of transmitting the infection to others (29). Addressing the uncertainty of living with HCV and the potential to alleviate this uncertainty through treatment may be a strategy to address ambivalence.
The majority of participants reported a history of substance use and perceived substance use to be the primary risk factor for HCV. Participants incorporated their personal history of risk behaviors into their perceived risk for HCV. Our study did not identify substance use as a perceived barrier to HCV care, in contrast to prior studies (30). This is encouraging, as our state does not have sobriety restrictions related to treatment access, though restrictions remain in other states (31). People who use drugs can face stigma during HCV treatment resulting in feeling a lack of support during treatment (32). While experienced stigma was uncommon among our participants, when present, stigma lowered motivation to pursue care. Among people who use drugs, HCV treatment can be a motivating factor to reduce substance use and/or to participate in harm reduction activities (29,33). Therefore, ensuring access to HCV care for people who use drugs in an environment free from stigma is critical.
Prior experiences with HCV care, either personal experiences or those of family and friends, are common and influenced all HBM constructs. Some patients have experienced discontinuous HCV care (34), in which patients diagnosed prior to DAA therapy have been lost to HCV care. Experience with interferon-based treatment regimens can motivate some patients to seek the more patient-friendly DAA treatment (35), though in our study, the severe side effects associated with interferon persist in patients’ memories and discourages them from reconnecting to care. Providers of HCV treatment must address the patients’ and others’ prior experiences with HCV treatment to provide appropriate counseling.
Established patient-provider relationships influence perceived barriers and self-efficacy. The quality of these patient-provider relationships determines if they serve as barriers or facilitators to care. Positive patient-provider relationships are beneficial in HCV treatment (35,36). Multiple patients cited their trusted provider as a key source of motivation for pursuing treatment and someone they could turn to for assistance. To build on established relationships, HCV treatment can be expanded to sites where patients are already receiving care such as primary care practices, health departments, or substance use disorder treatment programs. Expansion into other sites of care may also serve to decrease logistical barriers and decrease stigma. Yet, primary care providers remain hesitant to treat HCV, and HCV providers hesitate to treat those with substance use, resulting in limited uptake of these models of care (37–39).
Logistical barriers were prevalent including financial concerns related to lack of insurance, inadequate insurance, or the general cost of treatment. At the time this study was performed, our nurse coordinator was able to obtain medication for all patients who were seen in clinic who completed required paperwork, laboratory testing, and imaging studies through either insurance coverage or pharmaceutical company patient assistance programs. Therefore, from a clinic perspective, lack of insurance or underinsurance has not been a barrier to HCV care. However, the perception remains that treatment can be unaffordable. Multiple participants described the ability to overcome financial barriers by obtaining insurance that covers HCV treatment, and the recent Medicaid expansion in our state provides an opportunity for additional coverage. Medicaid expansion may also provide additional resources to address transportation needs. Pregnancy arose as a barrier for multiple patients. HCV treatment guidelines do not recommend treatment during pregnancy (40), and therefore clinics need to maintain a relationship with these patients in order to provide access to treatment when it is appropriate in the future. Patients also raised concerns about clinic level factors including scheduling availability, responsiveness to calls, and concerns regarding confidentiality, including the possibility of inadvertent disclosure that a patient receives care at an infectious disease clinic.
Notable limitations of our study include an inability to contact a majority of those who did not link to care in our clinic. Patients who could not be contacted may have different experiences living with HCV, including unstable phone numbers, which likely impacts their experience seeking care. Our clinic employs a nurse-navigator model. This model likely contributed to the excellent HCV knowledge among these patients, as the nurse provides education over the phone while discussing the logistics of referral. However, this may limit the generalizability of our findings. Basic knowledge about HCV was important, but not sufficient, for patients to pursue care as barriers prevent patients from acting on this knowledge.
Future education and public health campaigns for HCV should address the changes in HCV treatment and challenge the ambivalence felt by many, as these changes have led to a more streamlined, patient-friendly treatment regimen. People living with HCV have varied reasons for not pursuing care, and providers should explore patient perceptions, including knowledge of others’ experiences with HCV treatment, and an individual’s own prior experiences, in order to provide appropriate patient-centered counseling. Referral clinics can promote available resources to overcome perceived logistical barriers including lack of transportation, high cost of medications, and lack of insurance. Clinics should consider their limited timeframes for available appointments and how this can impact patients’ ability to attend appointments. Simplifications to the care model have been proposed, including rapid testing, minimal on-treatment monitoring, and limited patient visits, which may serve to reduce barriers, make treatment more accessible, and facilitate treatment expansion (41). Finally, we had difficulty contacting the majority of patients who failed to link to care. Alternative methods for contacting, linking, and retaining patients in care should be explored.