Utilising an Access to Care Integrated Framework to Explore the Perceptions of Hepatitis C Treatment of Hospital-Based Interventions Among People Who Use Drugs

Abstract

BACKGROUND:

Gaps remain in the hepatitis C virus (HCV) care cascade for people who use drugs (PWUD). Acute medical or surgical illnesses requiring hospitalisation are an opportunity to address addiction, but how inpatient strategies could affect HCV care accessibility for PWUD remains unknown. We explored patient perspectives of hospital-based interventions using an integrated framework of access to HCV care.

METHODS:

We conducted a qualitative study of hospitalised adults (n=27) with HCV and addiction admitted to an urban academic medical centre in the United States between June and November 2019. Individual interviews were audio-recorded, transcribed, and dual-coded. We analysed data with coding specific for hospital-based interventions including screening, conducting HCV-related laboratory work-up, starting treatment, connecting with peers, and coordinating outpatient care. We analysed coded data at the semantic level for emergent themes using a framework approach based off an integrated framework of access to HCV care.

RESULTS:

The majority of participants primarily used opioids (78%), were white (85%) and men (67%). Participants frequently reported HCV screening during previous hospitalisation with rare inpatient connection to HCV-related services. Participants expressed willingness to discuss HCV treatment candidacy during hospitalisation; however, lack of inpatient conversations led to perception that “nothing could be done” during admission. Participants expressed interest in completing inpatient HCV work-up to “get the ball rollin’” – consolidating care would enhance outpatient service permeability by reducing barriers. Others resisted HCV care coordination, preferring to focus on “immediate” issues including health conditions and addiction treatment. Participants also expressed openness to engaging with peers about HCV, noting shared drug use experience as critical to a peer relationship when discussing HCV.

CONCLUSION:

Hospitalised PWUD have varied priorities, necessitating adaptable interventions for addressing HCV. Hospitalisation can be an opportunity to address HCV access to care including identification of treatment eligibility, consolidation of care, and facilitation of HCV-related referrals.

1. Introduction

In 2016, the World Health Organisation (WHO) announced the goal of eliminating hepatitis C virus (HCV) as a global public health threat by 2030, defined as a 90% reduction in new HCV infections and a 65% reduction in HCV infection-related mortality¹. However, five years after the WHO announcement, only twelve countries are on track to reach 2030 elimination targets². In high-income countries, injection drug use is the leading cause of new HCV infections, with approximately two-thirds of people who inject drugs having evidence of HCV exposure^3–6. In the United States (U.S.), HCV incidence has increased, particularly in young adults, coinciding with the ongoing opioid overdose epidemic^7,8. Rates of HCV may rise even faster as the drug supply landscape shifts towards fentanyl analogues associated with more frequent and higher-risk injections^9,10.

The WHO announcement followed the development and approval of highly-effective and well-tolerated all-oral direct acting antiviral (DAA) curative treatment regimens. Prior to DAAs, interferon-based regimens, while similarly effective in those who did and did not inject drugs¹¹, had significant side effects and costs that limited their widespread use. DAAs have revolutionized HCV care with pan-genotypic regimens of 8 to 12 weeks curing on average 90–95% of patients^2,12,13. If effectively implemented, population-wide curative treatment of HCV could prevent new transmissions and outbreaks – a key component of treatment as prevention strategies to reduce spread amongst people who inject drugs^14,15. However, significant gaps remain in the HCV care cascade¹⁶, particularly for people who use drugs (PWUD)^17,18. While DAAs are highly effective in PWUD¹⁹, we continue to see significant barriers at the systems, provider, and patient levels^20–22. Systems-level barriers include requirements for multiple appointments prior to starting medication, decentralized care including phlebotomy, limitations on insurance coverage for those actively using substances including alcohol, and fibrosis severity requirements. Provider-level barriers include concerns around re-infection, gate-keeping around prescribing to those using substances, and limited training or comfort with prescribing DAAs. Patient-level barriers include concerns around medication side effects and other competing medical and non-medical priorities.

Given ongoing HCV treatment disparities for PWUD, interventions designed specifically for this structurally vulnerable population are needed to reach WHO elimination goals²³. The “Integrated Framework of Access to HCV Care for People who Inject Drugs” provides an organisational and conceptual structure for understanding the complex, inter-dependent, and changing barriers and facilitators to DAA treatment PWUD encounter in particular care settings and health system environments (Figure 1)²⁴. The integrated framework can be used by researchers, policy makers, public health officials, and clinicians to inform program implementation and evaluation to better understand how and why treatment gaps continue to exist in the HCV care cascade for PWUD²⁴. This framework is based off the concept of candidacy^24,25. First described by Dixon-Woods, et al²⁵, the core concept of “candidacy” is an ever-changing process and ongoing negotiation between individual patients and healthcare providers within the broader meso-level environment. Negotiating one’s candidacy in the context of HCV for PWUD includes 6 evolving stages through which a patient dynamically moves to access and complete HCV curative treatment: 1) identification of candidacy 2) navigation of services 3) permeability of services 4) appearing for health services 5) adjudication by providers and 6) offers and resistance^24,25. “Permeability” describes how easy or how challenging it is for patients to access a particular health care service and includes barriers that patients encounter when trying to access services²⁵. “Permeability” also incorporates culture clashes and stigma patients may experience in a given health setting²⁵. “Adjudication” refers to the process of healthcare providers in determining and judging care eligibility with incorporation of clinical guidelines and personal professional experience for a particular patient²⁵. Adjudication can include “gatekeeping” by providers or preventing access to care via system-wide barriers. Critiques to the “cascade of care” include placing undue onus on patients to present to and navigate their care in a system often working actively against or not doing enough to assist them²⁶. The six stages of negotiating candidacy occur within the larger psychosocial context of individual patient characteristics, the nature of the available HCV service environment, and the larger meso- and macro-level economic, political, legal, and social contexts where health care is delivered.

Figure 1:

Integrated framework of access to HCV care for people who inject drugs

Reprinted with permission from “Conceptualising access in the direct-acting antiviral era: An integrated framework to inform research and practice in HCV care for people who inject drugs,” by Høj, S. B., Jacka, B., Minoyan, N., Artenie, A. A., & Bruneau, J, 2019, International Journal of Drug Policy, 72, p 11–23. Copyright 2019 by Elsevier.

The access to HCV care integrated framework provides a model to understanding where barriers exist for PWUD. It also further contextualises why PWUD tend to avoid traditional care settings, often due to stigma or prior negative experiences²⁷. HCV outreach and treatment strategies have been implemented in various community care settings including opioid treatment programs^28,29, and syringe service programs³⁰. As the opioid overdose epidemic continues, hospitalisations and emergency room utilisation have significantly increased³¹. Many hospitalised patients with substance use disorder are not seeking treatment³², and have not previously engaged in care³³, making hospitals an important entry or touchpoint for PWUD into the healthcare system³⁴, and to potentially discuss access to HCV care. The objective of the current study was to explore patient perspectives of potential hospital-based interventions for improving access to HCV treatment for PWUD, applying the access to HCV care integrated framework.

2. Methods

2.1. Study Setting, Research Team, and Interview Guide Development

We conducted our qualitative study of hospitalised adults with substance use disorder and HCV at a single academic tertiary medical centre located in Portland, Oregon, U.S.. Our hospital has a comprehensive, multi-disciplinary addiction consult service consisting of addiction-trained clinicians (physician, nurse practitioner, and physician assistant), social workers, and peer recovery support specialists (peers) with well-established pathways to community addiction referrals and treatment^33,35–37. Our consult service meets regularly with hospital administrators, community partners, and inpatient stakeholders, such as nurses committed to improving care for those with addiction to improve systems and culture change around addiction and substance use³⁶. Peers on our consult service have personal lived experience with addiction, not specifically with HCV treatment, and connect with interested patients in the hospital^38,39. For interested patients, peers can then continue working with patients after discharge in the community acting as a bridge between inpatient and outpatient care settings^38,39. Our addiction consult service follows national guidelines that all admitted PWUD be offered laboratory screening for HCV, HIV, and syphilis within the last year or sooner based off risk factor assessment¹². We also provide counselling on safe injection practices to minimize risk of infection and overdose¹². Prior to the start of our study, Oregon eliminated all restrictions around insurance coverage for DAAs – to PWUD in January 2019⁴⁰, and related to fibrosis-stage in March 2019⁴¹.

Our study team created the semi-structured interview guide and received feedback from other experts in addiction medicine, HCV treatment, and qualitative research which was incorporated into the guide. We pilot tested the interview guide with an addiction consult service peer for feedback on question clarity and language usage prior to participant recruitment. The interview guide focused on 1) healthcare and hospitalisation experiences 2) barriers and facilitators to HCV treatment 3) discussions around eligibility for or interest in HCV treatment 4) experiences with HCV screening and diagnosis and 5) possible hospital-based interventions including completing HCV work-up during admission, starting DAA medications prior to discharge, connecting with a peer around HCV, and having a care coordinator assist with outpatient HCV care transition (Supplement 1).

2.2. Participant Eligibility

Eligible participants were adults 18 years or older admitted to the hospital for any reason (medical or surgical), and had an addiction consult order placed in the electronic health record by the primary admitting service. Our hospital does not have a dedicated inpatient psychiatric unit, as the state of Oregon has a separate psychiatric facility. After an addiction consult order was entered, the patient was further screened via chart review by study author XAL to confirm substance use disorder diagnosis (other than nicotine only) and verify active HCV. We defined active HCV infection as laboratory evidence of HCV antibody positivity and detectable HCV viral load via PCR. All laboratory orders were conducted independently of this research study. We included participants with prior experience with HCV treatment (interferon-based or interferon-free DAA regimen) who had either not successfully completed treatment or had gotten reinfected with HCV. Participants were ineligible if they had a life expectancy of less than 6 months or were under police custody. As interviews were conducted and analysed in English, non-English speakers were also ineligible.

2.3. Procedures and Data Collection

Eligible participants were approached between June and November 2019 by interviewers (XAL, TAV) trained in qualitative research methodology about study interest and to complete informed consent. Interviewers had no prior clinical relationship with participants at time of study enrolment. We utilized convenience sampling to identify potential participants during the interview period. There were twelve patients who declined to participate and ten who discharged prior to enrolment. We conducted individual interviews in patient’s hospital room or in an on-site conference room if participant was in a dual occupancy hospital room. Interviews were audio-recorded and transcribed verbatim by professional transcription services. Participants did not review audio recordings or transcripts. The average duration of interviews was 38 minutes (SD 14.3). All participants received a $20 gift card. The Oregon Health and Science University Institutional Review Board approved this study.

2.4. Analysis and Framework Approach

We conducted a directed content analysis^42,43 using the integrated framework of access to HCV care for people who inject drugs to guide code development and provide context for analysis of emerging themes^24,44. We analysed participant transcripts at the semantic level. Codes were developed in an iterative process by the coding team (XAL, TAV) who first coded ~10% of transcripts for a preliminary codebook and then continued to refine the codebook iteratively. Coding meetings were held regularly to review discrepancies in codes and ensure consensus and agreement. Following coding of all transcripts, we analysed coded data specific to the hospital-based interventions and focused on themes around the six components of negotiating HCV candidacy of the integrated access to HCV care framework. All data management and coding occurred using ATLAS.ti 8.4.

3. Results

Study participants, 27 in total, had an average age of 41 (range 23–64) years, were predominantly Caucasian (85%), and male (67%) (Table 1). More than half (56%) were experiencing homelessness and were unsheltered at time of hospital admission. The majority of participants identified their primary drug of choice as opioids/heroin (78%). Only one participant was diagnosed with HCV during the current hospitalisation, while 48% reported diagnosis over 5 years ago. The median length of stay for the hospitalisation when study interviews were conducted was 14 days (range 3–57). Using the integrated framework of access to HCV care, we identified and analysed five interventions (Table 2) that could be considered within the inpatient care setting to specifically address barriers and facilitate components of negotiating candidacy experienced by PWUD to accessing HCV treatment within the context of our local hospital setting and state HCV ecosystem²⁴.

Table 1 –

Study Participant Characteristics

Demographics	Number/Percentage n=27
Mean Age (in years) (SD)	40.9 (10.1)
Gender
Woman	8 (29.6%)
Man	18 (66.7%)
Non-Binary/Gender Non-conforming	1 (3.5%)
Ethnicity and Race
Caucasian/White	23 (85.2%)
Hispanic or Latinx	1 (3.5%)
American Indian/Alaska Native	1 (3.5%)
More than once race/Multi-racial/other	2 (7.5%)
Current Geographic Location
Portland metro area	20 (74.1%)
Other urban area (Eugene, Salem; Vancouver, Washington)	2 (7.5%)
Suburban area	2 (7.5%)
Rural	3 (11.1%)
Housing Status (at time of admission)
Permanent housing	4 (14.8%)
Staying with family/friends or couch surfing	4 (14.8%)
Experiencing homelessness (Transitional housing or staying in a shelter)	4 (14.8%)
Experiencing homelessness (Unhoused or unsheltered)	15 (55.6%)
Primary Substance/Drug of Choice
Opioids/heroin/fentanyl	21 (77.8%)
Methamphetamine/amphetamine	3 (11.1%)
Alcohol	3 (11.1%)
Time Since Initial HCV Diagnosis (participant self-report)
Current hospitalization	1 (3.5%)
Within previous 12 months	4 (14.8%)
Over 1 year ago but <5 years ago	9 (33.3%)
More than 5 years ago	13 (48.5%)
Established Primary Care Clinician (prior to current admission)
Yes	15 (55.6%)
No	12 (44.4%)

Table 2:

Hospital-based Integrated Framework of Access to HCV Care with Possible Hospital-Based Interventions

Hospital-Based Intervention	Main Candidacy Components Involved with Intervention	Potential Barriers to Implementation
Guideline-based HCV screening during hospital admission	Identification of Candidacy – Screening patients previously unaware of HCV diagnosis; Opportunity to discuss reducing HCV transmission to others and DAA treatment eligibility.	Limited post-HCV diagnosis counselling during admission; Need for inpatient provider education on DAA eligibility and HCV; Delay in lab results during hospitalisation (discharge prior to confirmation of HCV viral load); Delay in perceived HCV-related symptoms
Completing DAA pre-treatment HCV work-up	Navigation of Services – Reduce barriers (transportation, childcare, and income-related concerns; difficulty with phlebotomy access) from multiple outpatient appointments prior to starting DAA treatment by completing lab work during hospital admission Service Permeability – Removal of gate-keeping by removing multiple appointments prior to DAA initiation	Costs related to lab work performed in hospital (especially if patient unable to follow-up in time to start DAA medication); Lack of established primary care/outpatient relationship prior to admission; Outpatient providers requiring abstinence from substances, despite policy changes, prior to DAA treatment initiation for PWUD; Outpatient providers concerns around adherence; Lack of provider knowledge (inpatient and outpatient) about DAA eligibility for PWUD
Starting DAA treatment during admission	Service Permeability – Particularly for those with prolonged hospitalizations, could reduce barriers to DAA treatment by completing significant portion of course during admission Offers and Resistance – Patient preference to focus on non- HCV priorities including life-threatening medical conditions, psychosocial stressors, and addiction treatment	Inpatient providers requiring abstinence from substances prior to DAA treatment initiation for PWUD; Inpatient providers concerns around adherence; Lack of inpatient provider knowledge about DAA eligibility for PWUD; Concerns around medication cost and insurance reimbursement
Peer support around HCV diagnosis and treatment	Identification of Candidacy – Education around DAA eligibility in non-stigmatising manner Navigation of Services & Service Permeability – Bridge between inpatient care and outpatient appointments Appearance at Services – Advocate for PWUD at follow-up appointments for HCV care and treatment; patient-centred delivery of HCV-related health information	Time and resource restraints on peers; Need for peer training on HCV treatment and eligibility; Recruitment and training of PWUD with lived HCV treatment experience to become peers; Patients not wanting to work with a peer
Care coordination for HCV treatment after discharge	Navigation of Services – Care coordination to set-up new primary care, addiction treatment and HCV during hospitalisation with providers known to and trusted by ACS team and peers	Development and maintenance of a referral network to HCV treatment services after hospitalisation; Concerns around stigma from healthcare providers; Need for HCV treatment in varied settings including community programs

addiction consult service (ACS); direct acting antivirals (DAA); hepatitis C virus (HCV); people who use drugs (PWUD)

3.1. Discussions about HCV Status with Hospital Providers – Opportunity for Identification of HCV Treatment Candidacy

While many participants recounted being tested for HCV during prior hospitalisations, some participants were unaware that a test had been ordered until they were informed of their positive HCV status. Participants described having minimal or no conversations around their HCV diagnosis in the hospital, noting inpatient healthcare workers provided them with limited to no information about HCV-related health effects, treatment eligibility, follow-up, or prevention of transmission to others. “I was just told I had it. That was it. Never had a conversation about it” [P27, 42-year-old man]. While made aware of their positive status, there was little additional discussion to facilitate participant identification of candidacy for HCV treatment.

When participants were asked why they thought inpatient healthcare workers did not discuss HCV infection, most “didn’t know.” Some mentioned inpatient doctors needing to focus on acute issues. As noted by one participant [P7, 42-year-old woman], “what’s going on with me right now, [which is] more important” before addressing HCV. Others perceived an inability to treat HCV, including one participant [P26, 23-year-old woman] who stated inpatient doctors “can’t do anything about [HCV] here…they’re not gonna give you what you need here [in the hospital] about it”. However, when participants were amenable and receptive to talking about HCV during hospitalisation they did not know how or when to broach the subject. Participants mostly seemed to defer to inpatient healthcare workers around when to discuss HCV infection. A couple participants had what they described as “good” conversations during this recent hospitalisation. One participant [P3, 39-year-old man] noted the doctors on their team “let me know that [HCV treatment] was available and that I could do it if I wanted to.” However, some participants mentioned multiple hospitalisations after their HCV diagnosis with no further discussion around HCV leading to “frustrations”:

They don’t ever bring [my HCV] up. They bring up all kinds of crap that I’m not interested in…At a certain point, you just assume that if they’re not concerned with it, then maybe there’s nothing to be concerned about.

[P16, 36-year-old man]

Several participants noted that no one but our researchers brought up their HCV during hospitalisation, with the interview being the only time HCV and curative treatment were discussed. These participants said the interview reminded them that they should bring up their desire for more information around eligibility and options for HCV treatment to the addiction consult service peer, their inpatient medical team, or their outpatient physician after discharge. The interview provided new information to one participant:

I didn’t know they had [a cure for HCV] until today. I didn’t actually know it was possible for me to get it. As soon as I get home and talk to my doctor, I’m gonna try to start, right away…There’s a lot of people I’m sure that don’t know that there’s even a cure for it…They find out [they have HCV] while they’re in [the hospital], but that’s it. They tell ‘em then there’s nothing. They don’t give no other information. If they were to actually take the time to let people know that there’s a cure, that it’s a lot easier to get that when they first found out.

[P21, 38-year-old man]

3.2. Completing Work-Up for HCV Treatment during Admission – Consolidating Care Services and Reducing Barriers

Study researchers asked participants about their interest, if available, of completing all necessary laboratory work-up required for insurance DAA approval including liver function testing during the current admission required for starting HCV treatment. The laboratory results completed during hospitalisation could then be used by the program or clinician of their choice to order the appropriate regimen after discharge. Overall, participants were in support of completing lab testing during admission to consolidate their care and remove barriers. Participants were particularly concerned about number of appointments and prolonged wait times/delays to starting HCV treatment:

I take public transportation and I have a million other things I need to do other than continuing to make doctor appointments for one treatment…If we can’t figure something out here now in this one appointment so that I can continue to make money still as a single mom, then I don’t wanna keep coming back.

[P24, 31-year-old woman]

A few participants were disinclined to complete HCV treatment workup during their current admission. For some this deferment was due to competing health priorities, including ongoing medical and/or addiction-related issues. For other participants, there was hesitancy from a lack of HCV knowledge, and some wanting to “think about it more” [P8, 35-year-old man]. However, both of these participant groups pointed out how they could identify the value in getting the HCV testing completed for other hospitalised PWUD. Some participants noted how completing necessary HCV treatment evaluation during hospitalisation would make it significantly easier to start treatment after discharge. As one participant summarized, “[doing the lab work would] get the ball rollin’…and just save me time” [P2, 38-year-old man]. Some expressed completion of HCV laboratory testing as a motivator that would leave “no excuse to not do [the HCV treatment]” [P12, 40-year-old man]. Eliminating multiple outpatient appointments for laboratory testing and reducing insurance paperwork enhanced the permeability of HCV-related services for participants. One participant who lives in a rural community in Oregon explained:

If all the work was done while I’m here then it doesn’t really affect my day-to-day life when I leave…that’s a lotta the reason I haven’t done it myself, the time that I don’t have or the resources to get back and forth…I’d definitely be way more likely to participate.

[P2, 38-year-old man]

3.3. Starting HCV Treatment While Hospitalised – Challenges and Opportunities in the Context of Competing Acute Medical, Psychosocial, and Addiction-related Priorities

Participants were then asked about the possibility of starting HCV treatment during hospitalisation, with the understanding they would then need to complete the full DAA course after discharge. A few expressed how starting the medication during admission would “help them get in that routine, taking medication every day” [P23, 34-year-old non-binary person]. Those admitted for a prolonged hospital stay, greater than 2 weeks, with prior difficulties navigating services thought starting HCV medications during admission would work best for them. One participant asked, “Basically, I am in a bubble, I’m not going anywhere, so why don’t I take the medication?” [P4, 41-year-old man]. Another participant stated, “I’m gonna be here six weeks. I’d start tomorrow…if they told me I was healthy enough to take [the HCV treatment]” [P14, 52-year-old man]. Starting, and mostly completing, the HCV treatment in a controlled inpatient setting would further integrate HCV care for participants who had previously struggled with taking a daily medication, completing a treatment course, and making appointments.

However, many participants – who faced numerous acute health concerns including osteomyelitis, endocarditis, and limb amputations – thought starting HCV treatment could be harmful and “put too much strain on my body” [P3, 39-year-old man]. These participants preferred to focus on their immediate health issues, some voicing concerns about DAAs interacting with their other medications or health conditions. Many participants noted prioritizing their addiction treatment and recovery after discharge with uncertainty of availability of HCV treatment at those programs. Others thought doing the laboratory testing in the hospital was a good idea, but to wait to start the DAA treatment until one was connected to the clinician or clinic who would be continuing the prescriptions:

I would not wanna do it just for the simple factor there’s too many unknowns for me and when I’m finished with my hospital stay. I don’t wanna start something and there’s too many unknowns about me being able to follow through and actually complete the treatment.

[P25, 48-year-old man]

3.4. Peer Support around Negotiating HCV Treatment Candidacy – Shared Risk and Personal Lived Experience on Your Team Throughout the Process

Most participants expressed interest or willingness to engage with a peer about HCV during hospitalisation and could identify peers being helpful regarding HCV treatment engagement and connection with needed HCV follow-up appointments. Our addiction consult service has well-integrated peers and many study participants mentioned meeting with one of them to discuss their substance use prior to participating in the study interview, though they had not specifically discussed HCV infection. Some participants however, had not yet met with an addiction consult service peer or had chosen not to engage with one. A few participants did not want to work with a peer around HCV or their SUD due to personal preferences around wanting to be on their own. “[Working with peers is] not for me. [I’m] not a mentor-type person. I don’t like group. I don’t like talking to people about shit” [P27, 42-year-old man]. Others thought that a peer would not be helpful because they already understood HCV and the steps they needed to take to get the treatment:

“I’m not, like, ‘Oh, my God. I have Hep C.’ I know I do, and I do wanna get rid of it, and I know that it isn’t something that should be swept under—to be taken lightly, necessarily. I just don’t really feel like I need a peer about it.”

[P5, 27-year-old woman]

Those participants interested in working with a peer regarding their HCV, valued the “social support or moral support” [P3, 39-year-old man] that a peer could provide. Participants noted that peers could be another person on your team and that “two minds working together on the same problem” [P17, 50-year-old man] was better than being on their own. For some participants, peers could share their knowledge about the treatment regimen and anticipated side effects in a way they could understand. Peers could also act as guides or navigators through the healthcare system. As stated by one participant, “[a peer could] help me understand all of the information, or some of the things that I didn’t understand [about HCV]” [P3, 39-year-old man], which could help with resistance to starting DAA treatment. Peers were also a potential source of inspiration – “…You hear about how much better they’re doing, because they resolved [HCV], I guess that would be motivating…You imagine [HCV cure] in your own life”[P16, 36-year-old man]. Some mentioned in the future wanting to be peers themselves, valuing being a “good advocate for the cure” [P2, 38-year-old man]. Peers were also described as important health system navigators – helping participants keeping and remembering appointments, helping with completing HCV-related paperwork, and “kinda kick me in the butt” [P2, 38-year-old man] to complete the HCV treatment. As another participant reflected:

It’s always good to get support where you can get it because, as human beings, we’re very flawed people. Our priorities can change. Sometimes, it’s nice to have somebody to draw you back to centre and make you re-evaluate the situation.

[P15, 26-year-old man]

Participants noted that the shared risk of drug use was important in a peer relationship, “because not every addict gets Hep C, but every addict knows the risky behaviours that you take and knows the importance of getting help” [P23, 34-year-old non-binary person]. Given this shared potential for HCV exposure, many participants stated that a peer having personal lived experience with HCV and curative treatment as not necessary for the relationship. However, for some participants, having shared lived experience with HCV “would really be something,” according to one participant who had previously been unable to complete interferon-based therapy [P1, 64-year-old woman]. This same participant expressed interest in working with a peer with lived experience with older interferon-based treatment regimens noting “I don’t think anybody can imagine what it feels like unless they go through it.” Others reflected that a peer who had been cured of HCV would reduce stigma or shame they felt about being infected themselves:

That they had the same thing as me. That would be really cool…That would be amazing cuz I’m trying to beat this right here. It would show me that I can do it. If you can do it, I can do it. If you had it and you’re not embarrassed about it and you wanna share about it, that shows me a lot. That’s amazing.

[P20, 49-year-old man]

3.5. Care Coordination for HCV Treatment after Discharge – Integrated Services, Variability in Treatment Providers, and Asserting Eligibility for HCV Cure

Participants shared varied preferences for where and with whom they would want to follow-up for HCV treatment after hospitalisation. Those participants with well-established primary care relationships expressed interest in getting HCV treatment there because “it’s where I go already, so it would be the easiest route” [P23, 34-year-old non-binary person]. Another participant preferred primary care for HCV treatment as it would provide separation and help her in maintaining “recovery…to feel more safe…[to not be around] other people who do or did have drug problems” [P5, 27-year-old woman] noted. However, some participants were not sure if their primary doctor prescribed HCV treatment. Other participants reported barriers to HCV treatment, with some noting their primary care clinicians requiring they be “sober” before prescribing HCV treatment due to concerns a participant would “take the cure and then just get it again” [P15, 26-year-old man]. Some participants reported not having any information about who offered HCV treatment and “wouldn’t know where to start to get [HCV treatment]” [P3, 39-year-old man]. Those participants going to opioid treatment programs (OTP) for daily dispensing of methadone or buprenorphine thought it would be helpful and convenient if HCV treatment was offered at their OTP because “I go there every day…just get [HCV treatment] with your methadone” [P23, 34-year-old non-binary person]. Another participant stated:

I know that I’m killing two birds with one stone at the [OTP] – three birds with one stone…[I’m] keeping my sobriety, not having to use, of course getting your hepatitis pill, and killing my pain, all at the same window.

[P17, 50-year-old man]

A couple patients mentioned wanting to receive HCV treatment from specialists, gastroenterologists or infectious disease/HIV clinics, especially if they had a relationship with those clinicians or were going to follow-up with them for other reasons after discharge. When prompted, those using syringe service programs would be interested in receiving HCV treatment through those organizations:

“It would be better if I didn’t have the medication on me…it sounds so juvenile, but that’d be the most responsible way given my lifestyle and situation…to go somewhere that I was comfortable with [the syringe exchange] every day to take the pill… [That way] I’m not responsible for losing this shit and it’s someone community-wise that I trust.”

[P4, 41-year-old man]

4. Discussion

Hospital-based interventions for addressing gaps in the HCV care cascade could affect how PWUD negotiate their HCV treatment eligibility, assert themselves for care, and access HCV DAA cure by improving service permeability during and after their hospitalisation within the complex setting of acute, often life-threatening illness, ongoing prioritisation of addiction treatment, and multiple psychosocial stressors. Hospitalisation for acute medical or surgical illness can be an important opportunity to address HCV access to care for PWUD via targeted interventions, allowing providers to reach patients less engaged in outpatient health care. We utilised a framework approach using the integrated framework to identify key components to consider when designing and implementing hospital-based interventions for PWUD including lack of inpatient conversations around HCV treatment eligibility and need for flexibility in our interventions given significant variety in HCV prioritisation of inpatient PWUD.

Our study highlights the missed opportunities to identify and reinforce HCV candidacy in acute, inpatient care settings among structurally vulnerable patients from under-resourced communities particularly PWUD who often have numerous competing priorities, confront greater levels of homelessness, and have limited engagement and interaction with the healthcare system. Not discussing HCV when patients want to talk about it or broaching HCV when patients have other pressing priorities during their hospitalisation could both result in patients not feeling heard or understood by their medical team. Lack of discussions of HCV during hospitalisation could leave PWUD with the incorrect impression that HCV is not something they should worry about, HCV cannot be treated, or HCV treatment is not available to them. PWUD admitted to the hospital frequently face complex power dynamics (being compelled to engage in addiction care) and stigma (denying pain medications) by health care workers⁴⁵, which likely contributes to the lack of conversations around HCV candidacy during hospitalisation. PWUD often avoid or delay presentation to health care settings due to prior negative and stigmatising encounters^46,47 – and these past experiences may make hospital-based HCV interventions more challenging. Addiction consult services can play a critical role in both changing hospital health care culture⁴⁸ and improving trust of PWUD with the hospital system⁴⁹, which could begin to create a “safer environment” for PWUD⁴⁶.

Many of our participants had been previously diagnosed with HCV outside of outpatient care settings – during hospitalisation, while incarcerated, or when admitted to an inpatient addiction treatment program – with minimal to no counselling about what to do with this new diagnosis, how to prevent transmission to others, or where to engage in further HCV care. While recently updated guidelines now recommend one-time HCV screening for all adults⁵⁰, and there is increasing agreement in treating HCV-positive PWUD with DAAs^12,13, these recommendations may not be translating into changes in clinical practice and the type of information communicated to patients. Of note, nearly half (48%) of study participants had received their HCV diagnosis over 5 years ago. Several participants reported hearing from clinicians or community members about continued restrictions to HCV treatment due to ongoing or recent substance use, despite being eligible for curative DAA medications. In January 2019, six months before we started our study, Oregon eliminated requirements for addiction treatment engagement for PWUD for DAA authorization⁴⁰. Evolving Medicare, Medicaid, and insurance coverage regarding HCV treatment eligibility also jeopardize the negotiation of HCV candidacy⁵¹. Studies investigating how rapidly changing public health guidelines are best communicated and then adopted by clinicians are warranted.

Peers have extensive, varied, and expanding roles in healthcare, outreach, and harm reduction settings⁵². There is growing evidence of the valuable role of peers in addiction treatment and recovery support in the inpatient setting^38,39, and in HCV outreach and care navigation^53–55. Our study illustrates an additional potential role that recovery peers could have in bridging chasms between inpatient and outpatient health care systems⁵⁶, and between clinicians and PWUD, around HCV candidacy negotiation. Peers were noted by participants to provide support, knowledge, and guidance in navigating the complex health care system – one that is often discriminating and stigmatising towards PWUD⁵⁷. There were also a few participants who did not want to work with a peer and perhaps would be better served by an HCV care coordinator or case manager. However, incorporating peers into a particular health care setting must ensure they feel supported and valued⁵⁴. Peers working in addiction and substance use treatment also face unique demands including setting and maintaining boundaries, low compensation, and stigma^58,59. Hired peers usually are in recovery⁵⁸, which could create a cultural conflict in working with patients who are still actively using substances, though successful models integrating recovery and harm reduction exist⁶⁰.

Participants expressed varied desires around where and when they wanted to follow-up on their HCV care with a focus on “easy” access to services in a setting where they were “comfortable.” These findings highlight the significant hindrances PWUD frequently experience – the overall lack of service permeability – when it comes to HCV treatment. Experiences of homelessness and housing instability are common in PWUD who have HCV⁶¹, and this was true of participants in our study as well. These compounded barriers, particularly experiencing homelessness, will require significant additional community resources, housing supports, and outreach efforts^61–63. There is a need for broad and extensive referral networks for HCV DAA treatment that bridge outpatient and inpatient care environments catered to PWUD located in addiction treatment services (OTPs, office based opioid treatment programs), primary and outpatient care (federally qualified health centres), harm reduction programs, community outreach programs, and specialty clinics (infectious disease, gastroenterology) in both urban and rural communities⁶⁴. Training and education to increase the pool of clinicians comfortable with prescribing DAAs, especially for PWUDs are urgently needed^65,66. Having a central, up-to-date database of clinicians capable of treating HCV for PWUD in a non-stigmatising and patient-centered approach, would be helpful for referring physicians, particularly hospitals and acute care settings.

Our study has limitations including being set at a single, urban, academic site, with limited racial and ethnic diversity. Given disparities in the HCV care cascade in racial and ethnic minority populations^67,68, research on interventions to understand and address those disparities is critical to achieve HCV health equity⁶⁹. Our hospital also has a well-established addiction consult service, thus our findings may be less applicable to systems without these services that reduce stigma from inpatient medical staff around caring for those with addiction⁴⁸. However, many participants had received care at other inpatient settings and those findings are incorporated into our study. We also asked participants about primary drug/substance of choice without evaluation or inclusion of polysubstance use which is of growing public health concern⁷⁰. There is a need for further research in barriers faced by patients who use multiple substances and in those who use alcohol who may face different barriers or stigma given the combined hepatotoxic effects of alcohol and HCV. We also did not look at possible in-group differences between those who had prior HCV treatment experience and those who had none. There were no participants who had history of re-infection with HCV. Lastly, we did not follow participants after discharge to evaluate how engaging with our study may have affected participant engagement and access to HCV care.

Despite these limitations, our work has important strengths particularly in its novel approach in using an integrated framework of access to HCV care and future implications for the literature of patient perspectives around barriers and facilitators for PWUD in accessing HCV care. While there has been important research exploring the perspectives of PWUD engaged in or who have completed HCV treatment^71,72, there has been less conducted on those who have not yet started treated treatment, are not actively seeking HCV cure, and those located in the hospital or acute care setting.

Hospitalisation is an important opportunity to engage PWUD around their addiction and can be a time to address HCV in a patient-centred approach recognizing the complex medical and psychosocial needs of PWUD. To improve the health of PWUD with HCV – and reach ambitious WHO HCV elimination targets¹ – we need to develop and implement patient-centred interventions with integrated funding opportunities designed to dismantle inpatient and outpatient/community silos while fostering health systems integration. Hospital-based interventions to address gaps in the HCV care cascade for PWUD should consider 1) recognition of eligibility for HCV treatment 2) expedition by healthcare professionals and peers who are aware of HCV treatment guidelines and can help patients who have experienced significant stigma and marginalisation patients navigating care pathways and 3) facilitation of referrals and needed HCV-related services determined by patient preference and priorities.