Abstract
Objectives
Direct-acting antivirals provide an opportunity to eliminate hepatitis C virus (HCV) as a public health threat in Australia, yet barriers to care remain. In this study, we use baseline data from a longitudinal cohort of people who inject drugs to understand differences in participant characteristics and explore experiences of stigma, health service utilisation and health literacy between three care cascade groups.
Design
Cross-sectional.
Setting
Community and private primary healthcare services in Melbourne, Australia.
Participants
Participants completed baseline surveys between 19 September 2018 and 15 December 2020. We recruited 288 participants; the median age was 42 years (IQR: 37–49 years) and 198 (69%) were male. At baseline, 103 (36%) self-reported being ‘not engaged in testing’, 127 (44%) had HCV RNA positivity but were ‘not engaged in treatment’ and 58 (20%) were ‘engaged in HCV treatment’.
Outcome measures
Descriptive statistics were used to present the baseline demographics, health service utilisation and experiences of stigma data. We explored differences in these scales between participant demographics using χ2 test or fisher’s exact tests, and differences between health literacy scores using one-way analysis of variance tests.
Results
A majority were in regular contact with multiple health services, and most had previously been identified as at-risk of HCV. In the 12 months preceding baseline, 70% reported any experiences of stigma related to injecting drug use. Assessment of health literacy data identified gaps for those ‘not engaged in testing’ and ‘not engaged in treatment’ across two relevant domains: ‘ability to appraise health information’ and ‘ability to actively engage with healthcare providers’.
Conclusion
In eliminate hepatitis C experience, lower HCV testing and treatment may be explained by experiences of stigmatisation or gaps in health literacy. Enhanced interventions targeting people who inject drugs to promote HCV care are needed.
Keywords: Health Services Accessibility, Health policy, Public health
Strengths and limitations of this study.
While our sample was restricted to only include people who inject drugs, the sample captured heterogeneity in hepatitis C virus status.
Another strength of this study is the inclusion of various measures of health determinants, such as health literacy.
While drawing data from a longitudinal cohort, this study only presents cross-sectional data to describe the baseline cohort, thereby limiting causative inference.
The focus on participants living in metropolitan Australian areas may limit generalisability.
COVID-19 lockdowns and associated restrictions meant we were unable to reach recruitment targets.
Introduction
The development of direct-acting antiviral (DAA) treatments for hepatitis C virus (HCV) infection has seen the WHO call for the elimination of HCV as a public health problem by 2030.1 In Australia and most other high-income countries, people who inject drugs (PWID) are the group most at-risk for HCV infection.2 3 Highly tolerable, effective (>95% cure rates) and simple (oral tablets for 8–12 weeks) DAA treatment have been universally available in Australia since 2016.4 As of December 2020, around 90 000 people had initiated treatment, representing 47% of the estimated 188 690 people living with HCV in 2015.2 A key contributor to this success was a systemic shift from the centralisation of HCV care in tertiary-based, specialist provided care, to community-based primary care services with general practitioner (GP) and nurse practitioner prescribing of DAAs under the Pharmaceutical Benefits Scheme. Yet, treatment uptake is now falling with only 11 314 people initiated treatments in 2019 (vs 332 016 in 2016) and the decline has continued with an estimated 8228 treatments in 2020, in part due to COVID-19.1 2 Modelling suggests a need to increase the number of people accessing testing by at least 50% relative to 2018 levels to reach the elimination targets.5 To achieve HCV elimination by 2030, policymakers and practitioners need to adapt structural systems in a way that recognises competing health and social priorities of affected communities, to engage people in HCV testing and treatment who have not been reached.6
Previous studies have outlined the barriers to HCV testing and treatment among PWID in both the interferon and DAA-eras of HCV care.7 8 Perceived stigma and experienced discrimination in healthcare settings can be a strong deterrent for attending services and disclosing drug-related behaviours.9 10 Transient lifestyles and competing priorities such as housing, substance dependence and comorbidities have also been described as barriers to addressing HCV, which can be perceived as a less immediate need.11 12 Also, lack of information and misinformation about the health impacts of HCV, what HCV treatment involves and concern of treatment side-effects have been noted as barriers to care.13 Difficult venous access is a common barrier to collecting necessary blood samples for HCV testing and treatment assessment.14
To better understand the barriers and enablers to accessing HCV testing and treatment and how these may change over time, we established a cohort of PWID in 2018. The eliminate hepatitis (EC)-experience cohort is a prospective longitudinal cohort that targeted participants with different levels of engagement with HCV testing and treatment.15 In this baseline paper, we first describe the baseline profile of the EC-experience cohort, including participant demographics, experiences of stigma and discrimination and health literacy, as compared across the three baseline categories of HCV care engagement. We then explore the relationship between heath literacy and engagement in the HCV care cascade. Finally, we descriptively explore prevalence of stigma in the 12 months preceding baseline interview.
Methods
Setting
The EC-experience study protocol has been published previously.15 Baseline recruitment was conducted in Melbourne, Australia between September 2018 and December 2020 from five sites: three primary healthcare clinics with needle and syringe programmes (NSPs) and two private GP clinics with a high caseload of opioid agonist therapy (OAT) patients.
Recruitment
Sample size procedures and calculations are detailed in the protocol paper.15 Calculations were conducted to permit multivariable modelling to examine the relationship between engagement in HCV care and five other exposure variables, adjusted for site as a random effect. Other assumptions relating to loss to follow-up rate, HCV RNA prevalence and engagement in HCV testing or treatment during the follow-up period were factored into the calculation. A recruitment target of ~70 participants was set for each site, separated into three groups according to their self-reported baseline level of HCV testing and treatment engagement: (1) ‘not engaged in HCV testing’ group defined as having never tested for HCV, not tested in the past 12 months or tested within 12 months but unaware of their HCV status (n= ~30); (2) ‘not engaged in HCV treatment’ group defined as self-reported to be HCV-positive but not yet started DAA treatment (n= ~30) and (3) ‘engaged in HCV treatment’ group, defined as those who had completed HCV treatment (n= ~10). Four participants who were currently engaged with DAA treatment were recruited into the cohort at baseline, and despite being technically ineligible with our study protocol, were retained within cohort analysis in group three, ‘engaged in treatment’, as including this group is consistent with our purposive recruitment strategy around examining progress through the care cascade.
Eligibility and inclusion criteria
Participants were eligible for inclusion if, at the time of recruitment, they:
Were aged≥18 years.
Reported current or lifetime history of injecting drug use.
Were active clients at the recruitment site (as verbally confirmed by participants) during the recruitment period; defined as accessing one or more of the following services at the site over the previous 12 months: HCV care, OAT prescribing, general healthcare and/or sterile needle and syringe procurement (at sites select sites that offered NSPs).
Had not been diagnosed as HCV-negative within the 12 months prior to baseline.
Were not receiving DAA treatment at baseline.
Were willing and able to provide informed consent to participate in the study.
Participants
Two hundred and ninety-two participants were recruited in total, with 103 in the ‘not engaged in HCV testing’ group, 127 in the ‘not engaged in HCV treatment’ and 58 in the ‘engaged in HCV treatment’.
Measures and variables for inclusion
At baseline, participants completed a face-to-face, interviewer-administered survey that included a range of self-reported measures such as sociodemographics, patterns of alcohol and other drug (AOD) use, health service utilisation in the past 12 months (from a list of predetermined health services), treatment history, barriers to HCV testing/treatment, a validated scale assessing experiences of stigma and discrimination16 and a validated health literacy scale.17
We measured health literacy using the ‘Health Literacy Questionnaire’ (HLQ), which collects 44 individual items across nine different domains (Feeling understood and supported by healthcare providers; Having sufficient information to manage my health; Actively managing my health; Social support for health; Appraisal of health information; Ability to actively engage with healthcare providers; Navigating the healthcare system; Ability to find good health information and Understand health information well enough to know what to do). The HLQ has been tested among sociodemographic groups and established that comparisons between groups based on summed or averaged scale scores have little or no bias.18 Domains 1–5 use a four-point scale (strongly disagree, disagree, agree and strongly agree) and domains 6–9 use a five-point scale (always difficult, usually difficult, sometimes difficult, usually easy and always easy).17
Patient and public involvement
Extensive consultation was performed with Harm Reduction Victoria, a peer-run advocacy organisation for PWID in Melbourne, Australia. Harm Reduction Victoria provided invaluable expert input regarding questionnaire design, such as identification of common barriers and enablers to HCV care among PWID.
Consent and reimbursement
Written informed consent was obtained from participants prior to commencing the baseline interview. Participants were reimbursed $A40 for their time and expenses at baseline interview.
Analysis
We summarised three groups of participants based on testing and treatment engagement (see methods) using descriptive statistics and assessed differences in sociodemographics using χ2 tests and Fisher’s exact tests when expected cell counts were small. The Alcohol Use Disorder Identification Test (AUDIT-C) was scored according to instructions from the original developers.19
For the HLQ, we report on mean scores and SD for each domain and assess difference in mean scores between the three care cascade groups using one-way analysis of variance tests and post-hoc Tukey tests.17
To assess health service utilisation, we asked participants what health service types they had accessed in the past 12 months from a list of 12 common health service types (eg, GPs, hospital, NSPs, pharmacies, AOD treatment providers, etc). We then created a derived variable that represented the number of different health services accessed by participants, with three categories:1 1–3 service types;2 4–6 service types;3 7–12 service types. To assess differences between the three care cascade groups, we used χ2 or test of proportions for each three service categories.
The stigma indicator scale explores reported experiences of stigma according to three dimensions1 injecting drug use,2 living with HCV, and3 ever having been in prison. Data were dichotomised for each dimension into stigma experienced ‘never’ versus ‘ever’, then the measures are descriptively reported.
Results
Sociodemographics
Table 1 shows sociodemographics of the three HCV care cascade groups and the overall sample. Median age across the sample at recruitment was 42 years (IQR: 37–49). One-hundred and ninety-eight (69%) participants identified as male, 30 (10%) participants identified as Aboriginal and/or Torres Strait Islanders and 231 (80%) reported being born in Australia. Two hundred and thirty-one (80%) participants reported injecting drugs in the past 1 month, with 170 (74%) participants reporting that heroin was the primary substance injected. Seventy-four (26%) reported living in unstable housing (eg, rough sleeping or couch surfing). Among those who were engaged in HCV treatment, 51 had received DAAs and seven had received interferon. Of the 58 ever treated, 17 had been treated within the 12 months preceding recruitment, and 41 had been treated more than 12 months before recruitment.
Table 1.
Baseline characteristics of study participants (n=290)
| Whole sample (n=288) | Not engaged in HCV testing (n=103) | Not engaged with HCV treatment (n=127) | Engaged in HCV treatment (n=58) | X2 P value | |
| n (%) | n (%) | n (%) | n (%) | ||
| Recruitment site | |||||
| Site A (NSP) | 59 (20) | 20 (19) | 30 (24) | 9 (16) | 0.234* |
| Site B (NSP) | 69 (24) | 26 (25) | 33 (26) | 11 (19) | |
| Site C (NSP) | 72 (25) | 25 (24) | 28 (22) | 17 (29) | |
| Site D (private GP) | 74 (26) | 27 (27) | 33 (26) | 15 (26) | |
| Site E (private GP) | 14 (5) | 5 (5) | 3 (2) | 6 (10) | |
| Gender | |||||
| Male | 198 (69) | 74 (72) | 82 (65) | 42 (72) | 0.395 |
| Female | 90 (31) | 29 (28) | 45 (35) | 16 (28) | |
| Age | |||||
| 18–39 | 107 (37) | 46 (45) | 48 (38) | 13 (22) | <0.001 |
| 40–49 | 111 (39) | 36 (35) | 60 (47) | 15 (26) | |
| 50+ | 70 (24) | 21 (20) | 19 (15) | 30 (52) | |
| Country of birth | |||||
| Australia | 231 (80) | 84 (82) | 108 (85) | 39 (67) | 0.017 |
| Overseas | 57 (20) | 19 (18) | 19 (15) | 19 (33) | |
| Indigenous status | |||||
| Yes, Aboriginal or Torres Strait Islander | 30 (10) | 8 (8) | 19 (15) | 3 (5) | 0.084* |
| No | 258 (90) | 95 (92) | 108 (85) | 55 (95) | |
| Education level | |||||
| Primary: year 11 | 200 (69) | 67 (65) | 96 (76) | 37 (64) | 0.319 |
| Year 12 | 42 (15) | 18 (17) | 13 (10) | 11 (19) | |
| Postschool qualification | 46 (16) | 18 (17) | 18 (14) | 10 (17) | |
| Opioid agonist therapy (current) | |||||
| Yes | 197 (68) | 71 (69) | 83 (65) | 43 (74) | 0.486 |
| No | 91 (32) | 32 (31) | 44 (35) | 15 (26) | |
| Injecting drugs in past month | |||||
| Yes | 231 (80) | 83 (81) | 112 (88) | 36 (62) | <0.001 |
| No | 57 (20) | 20 (19) | 15 (12) | 22 (38) | |
| Drug most injected (past month)† | |||||
| n=231 | n=83 | n=112 | n=36 | ||
| Heroin | 170 (74) | 64 (77) | 76 (68) | 30 (83) | 0.310* |
| Methamphetamine | 57 (25) | 17 (20) | 34 (30) | 6 (17) | |
| Other | 4 (2) | 2 (2) | 2 (2) | 0 (0) | |
| Alcohol Use Disorder Identification Test (AUDIT-C) | |||||
| Low risk | 217 (75) | 76 (74) | 93 (73) | 48 (83) | 0.109* |
| Increasing risk | 37 (13) | 17 (16) | 17 (13) | 3 (5) | |
| Higher risk | 14 (5) | 5 (5) | 4 (3) | 5 (9) | |
| Possible dependence | 20 (7) | 5 (5) | 13 (10) | 2 (3) | |
| Employment status (missing=1) | |||||
| Unemployed | 259 (90) | 90 (87) | 115 (91) | 54 (93) | 0.499* |
| Employed | 28 (10) | 13 (13) | 11 (9) | 4 (7) | |
| Income source | |||||
| Government welfare | 255 (88) | 88 (85) | 111 (87) | 56 (97) | 0.271 |
| Wage/salary | 19 (7) | 10 (10) | 8 (6) | 1 (2) | |
| Other/no income | 15 (5) | 6 (6) | 8 (7) | 1(2) | |
| Housing stability | |||||
| Stable | 214 (74) | 82 (80) | 85 (67) | 47 (81) | 0.039 |
| Unstable | 74 (26) | 21 (20) | 42 (33) | 11 (19) | |
| Incarceration (ever) | |||||
| Yes | 184 (64) | 54 (52) | 94 (74) | 36 (62) | 0.003 |
| No | 104 (36) | 49 (48) | 33 (26) | 22 (38) | |
| Incarceration (past 12 months) | |||||
| Yes | 48 (26) | 15 (28) | 27 (29) | 6 (17) | 0.354 |
| No | 136 (74) | 39 (72) | 67 (71) | 30 (83) | |
Bold indicates a statistically significant difference with a p-value<0.05.
*Fisher’s exact test used.
†Only participants who self-reported injecting in the month preceding baseline interview were asked what drug they had injected the most.
GP, general practitioner; HCV, hepatitis C virus; NSP, needle and syringe programme.
As shown in table 1, recruitment numbers at site E were lower than the other sites. This is because recruitment occurred when COVID-19 social isolation requirements were in place in Victoria, which meant we were recruiting participants and liaising with the health service via teleconference and telephone. This process was unsuccessful in generating enough interest to recruit participants within the study timeline, therefore a decision was made to cease recruitment at site E early.
There were statistically significant differences in the sociodemographic profiles of the three HCV care cascade groups (table 1). Those ‘engaged in HCV treatment’ were more likely to be aged 50+ compared with to younger age groups and born overseas. Those ‘engaged in HCV treatment’ were less likely to report injecting drug use in the past month and Aboriginal or Torres Strait Islander status, compared with the ‘not engaged in HCV testing’ and the ‘not engaged in HCV treatment’ groups. Those in the ‘not engaged in HCV treatment’ group were more likely to report unstable housing and history of incarceration compared with those ‘not engaged in HCV testing’ and those ‘engaged in HCV treatment’.
Health literacy
Table 2 shows mean health literacy scores across the nine domains of health literacy, reported by HCV care cascade engagement groups and for the whole sample.
Table 2.
Baseline health literacy scores
| Whole sample (n=284) | Not engaged in HCV testing (n=103) | Not engaged in HCV treatment (n=125) | Engaged in HCV treatment (n=56) | |
| Health literacy domain | Mean (SD) | Mean (SD) | Mean (SD) | Mean (SD) |
| Feeling understood and supported by healthcare providers* | 3.15 (0.54) | 3.15 (0.52) | 3.09 (0.50) | 3.29 (0.67) |
| Having sufficient information to manage my health* | 2.97 (0.52) | 2.99 (0.55) | 2.93 (0.48) | 3.04 (0.53) |
| Actively managing my health* | 2.65 (0.55) | 2.61 (0.58) | 2.64 (0.48) | 2.75 (0.63) |
| Social support for health* | 2.76 (0.54) | 2.77 (0.58) | 2.78 (0.47) | 2.71 (0.66) |
| Appraisal of health information* | 2.77 (0.47) | 2.78 (0.46) | 2.75 (0.42) | 2.77 (0.65) |
| Ability to actively engage with healthcare providers† | 3.84 (0.77) | 3.80 (0.80) | 3.73 (0.67) | 4.13 (0.93) |
| Navigating the healthcare system† | 3.74 (0.70) | 3.78 (0.69) | 3.61 (0.65) | 3.98 (0.77) |
| Ability to find good health information† | 3.79 (0.77) | 3.87 (0.76) | 3.69 (0.70) | 3.90 (0.95) |
| Understand health information well enough to know what to do† | 3.98 (0.74) | 4.09 (0.73) | 3.86 (0.66) | 4.03 (0.96) |
Bolded results indicate where there were differences in mean HLQ scale scores between individual HCV care cascade groups according to one-way ANOVA, p<0.05.
*Scale range 0–4.
†Scale range 0–5
ANOVA, analysis of variance; HCV, hepatitis C virus; HLQ, Health Literacy Questionnaire.
There was a statistically significant difference for the domain ‘Ability to actively engage with healthcare providers’ (F(2,281) = 5.61, p<0.01), with post-hoc tests showing mean scores on this domain higher for the ‘engaged in HCV treatment’ group compared with the ‘not engaged in HCV testing’ (p=0.02) and ‘not engaged in HCV treatment’ (p<0.01) groups. For this domain, no significant differences were observed between the ‘not engaged in HCV testing’ and ‘not engaged in HCV treatment’ groups (p=0.80).
Similarly, a statistically significant difference was identified for the domain ‘Navigating the healthcare system’ (F(2,281) = 5.62, p<0.01), with a post-hoc comparison also showing mean scores for this domain higher for the ‘engaged in HCV treatment’ group, compared with the ‘not engaged in HCV treatment’ (p<0.01) group. Again, for this domain, no significant difference was observed between the ‘not engaged in HCV testing’ and ‘not engaged in HCV treatment’ groups (p=0.17), as well as the ‘engaged in HCV treatment’ vs ‘not engaged in HCV testing’ groups (p=0.19).
Health service utilisation
The most common health services accessed by participants in the past 12 months were GPs (n=261), NSPs (n=244), OAT providers (n=217), community health services (n=198) and housing services (n=117). Across each subgroup of the HCV care cascade and the whole sample, most participants had utilised four to six different types of services in the past 12 months (figure 1).
Figure 1.
Number of types of services accessed in the past 12 months.
Experience of stigma and discrimination related to injecting drug use
Seventy per cent (n=199) of participants reported experiencing any stigma and/or discrimination relating to injecting drug use in the past 12 months (figure 2). People ‘engaged in HCV treatment’ reported lower levels of injecting drug use-related stigma (57% experienced stigma in the past 12 months), compared with those who were ‘not engaged with HCV treatment’ (78% experienced stigma in the past 12 months). The differences between groups was not significant by χ2 testing.
Figure 2.
Experiences of injecting drug use-related stigma in the previous 12 months.
Among participants who were ‘not engaged with HCV treatment’ at the time of baseline interview and responded to this question (n=123), 44% reported experiencing any stigma and/or discrimination in the past 12 months relating to HCV (figure 3).
Figure 3.
Experiences of hepatitis C-related stigma in the previous 12 months among participants ‘not engaged in HCV treatment’. HCV, hepatitis C virus.
Discussion
Our study recruited groups of PWID with different levels of engagement in HCV care to describe and analyse sociodemographics, health service utilisation, experiences of stigma and health literacy and begin to explore how these factors relate to HCV care engagement. Similar to other observational cohort studies of PWID, we observed a high prevalence of socioeconomic disadvantage among the cohort, including low education levels, unstable housing, unemployment, welfare support and lifetime history of incarceration.20–22 Across the three HCV care cascade groups, we identified variations in baseline characteristics, such as those aged 50+ and those who had not injected in the past month being more likely to have been engaged in treatment. Differences were observed in that people who were ‘not engaged in testing’ and ‘not engaged in treatment’ scored lower across aspects of the HLQ such as ‘ability to engage with healthcare providers’ and ‘navigating the healthcare system’. A higher percentage of the ‘engaged in treatment’ group reported accessing more services compared with the other two groups. Similarly, people who were ‘engaged in treatment’ also tended to report experiences of stigma in relation to injecting drug use less frequently in the past 12 months.
This study contributes to understanding health literacy gaps and needs among PWID. In the context of health literacy and areas for improvement, previous research has identified that trusting and supportive relationships with healthcare providers is vital to facilitating HCV treatment. In addition, better supporting clients to navigate the healthcare system could be achieved through peer navigation programmes, social support and multidisciplinary service models.23 24 While we did not assess changes over time in this cross-sectional baseline analysis, future analyses of follow-up data may allow us to identify if improvements in HLQ domains impact HCV treatment uptake within the cohort. Previous studies using the HLQ have identified that people attending substance use disorder treatment and NSP participants report low health literacy levels that can negatively impact health outcomes and quality of life.25 26 In 2018, the Australian Bureau of Statistics (ABS) surveyed 5790 respondents from the general population using the HLQ. Participants in the EC-experience cohort scored lower than the general population across all domains of the HLQ, with the largest differences observed for ‘actively managing my health’ (EC-experience mean score 2.65 vs ABS mean score 3.09), ‘social support for health’ (EC-experience mean score 2.76 vs ABS mean score 2.92), ‘ability to engage with healthcare providers’ (EC-experience mean score 3.84 vs ABS mean score 4.18) and ‘understand health information well enough to know what to do’ (EC-experience mean sure 3.98 vs ABS mean score 4.27).27 These apparent lower HLQ scores among EC experience participants compared with the general Australian population demonstrates another area of socioeconomic disadvantage among PWID and may suggest a need to focus on increasing health literacy to support HCV elimination.
We purposively recruited participants at different stages of the HCV care cascade in an attempt to understand if limited access to services was a barrier to taking up HCV treatment, however, the majority of the sample were well engaged with a range of health services. Three quarters of the sample reported accessing four to six in the 12 months prior to baseline, with the types of services most attended being GPs, OAT providers, NSPs and community health services and housing services. Overall, those who were ‘engaged in HCV treatment’ had proportionately accessed more services in the past year compared with the other care cascade groups, but most participants had accessed at least four services. These consistently high levels of service access between groups suggest that access alone is insufficient to facilitate HCV testing and treatment, but rather, what occurs at the point of service engagement is more important. A recent study by Chidwick et al 28 assessing DAA up take in GP settings reported that few patients were started on DAAs, and a facilitated discussion in HCV management did not lead to a significant increase. They suggested alternative measures, such as incentivising GP initiations or patients, may be required to address remaining barriers to DAA uptake in Australian primary care.28
The broader socioeconomic disadvantage faced by PWID is a key consideration for HCV elimination, who are often experiencing multiple, complex issues such as housing instability, frequent reporting requirements for probation and parole, multiple comorbidities which can be more acute issues than HCV.8 29 While primary healthcare services that focus on health and social service provision to PWID are well placed to provide holistic, person-centred support,30 they are often extremely busy and have limited capacity to prioritise HCV care given their funding models.11 To increase opportunities of engaging people in HCV care, HCV elimination strategies could look at integrating HCV care into a range of other settings where clients already have case managers, longer appointment times and are getting support for their comorbidities. For example, research has demonstrated the effectiveness of delivering HCV care in mental health services,31 homelessness services32 and alcohol and other drug treatment services.33
Injecting drug use related stigma was highly prevalent among our whole sample but was more commonly reported by those ‘not engaged in HCV testing’ and those ‘not engaged in HCV treatment’, compared with those who were ‘engaged in HCV treatment’. Importantly, these groups were more likely to report being actively injecting and in unstable housing and have a history of incarceration, which may be contributing to them experience greater levels of intersecting stigma relating to their substance use, their HCV status and their history of incarceration, which may by preventing HCV care engagement, compared with those who had completed treatment.34 Continuing to reduce stigma and discrimination relating to injecting drug use in the community and healthcare settings needs to be a priority for HCV elimination. Other studies reporting on experiences of stigma, such as Broady et al,35 who found similar levels of injecting drug use related stigma among 731 PWID in 2021 to participants in our study who were ‘not engaged in treatment’.35 Previous analysis using the EC-experience cohort data set by Djordjevic et al 9 identified that higher service use access was associated with greater experiences of stigma among PWID.9 To address these concerns, efforts designed to build trust between patient/providers, including sensitivity training for providers around injecting drug use and understanding competing priorities for this population group, and potentially incentivising providers to treat PWID either through direct payments36 or providing revised Medical Benefits Schedule (MBS) payments for longer clinic appointments acknowledging the complex needs of these clients.29 Additionally, qualitative studies highlight how stigma can be a strong deterrent for engaging in HCV care,34 supporting the need to address stigma towards PWID in healthcare settings to facilitate HCV treatment uptake.10
Limitations
In our study, we only report on cross-sectional data limiting our ability to assess the temporal relationship between exposures and outcomes. Second, the data presented in this paper are based on self-reported responses and may therefore be subject to reporting and recall bias. Third, participants were recruited from health services in metropolitan Melbourne; meaning our findings may not generalise to PWID who do not access health services, or do not reside in urban areas. The purposive sampling and recruitment targets meant that our study population is not representative of the broader population of PWID who access GPs primary health services. Finally, as previously mentioned, we were unable to reach our recruitment goal at one of the study sites due to COVID-19 restrictions on in-person site attendance.
Conclusion
To achieve global HCV elimination targets, a greater understanding of the social factors that act as barriers for PWID to access HCV care is needed to facilitate testing and treatment uptake. Baseline data collected through the EC-experience cohort demonstrate that despite utilisation of multiple healthcare services, health literacy gaps and stigma continue to be issues for PWID that may impact on HCV care engagement. Elimination policy strategies and clinical practice may benefit from improving aspects of health literacy for PWID, particularly around provider engagement and navigating health services.
Supplementary Material
Footnotes
Twitter: @higgspg
Contributors: KR and DO’K coordinated study implementation and protocol development. JGu, DO'K and AP are the study guarantors. JGu, BLD, FD, IE, CL, JGo, KC, AP and PK supported protocol writing and paper drafting. PD, PH, JD, MAS and MH supported additional drafting of the protocol paper. All authors provided substantial expert input and guidance in the development of this protocol paper. All authors approved the final version of the paper manuscript.
Funding: This work was supported by funding through a National Health and Medical Research Council partnership grant (grant no. 1116161), with additional funding provided by Gilead Sciences (grant no. not applicable). The Burnet Institute gratefully acknowledges the funding it receives from the Victorian Operational Infrastructure Fund.
Competing interests: JD, MH, MAS and AP receive investigator-initiated research funding support from Gilead Sciences, Abbvie and Bristol-Myers Squibb and Merck. JD and his institution have received consultancies from Gilead, AbbVie and Merck. AP and their institution have received consultancies from Gilead. PH receives investigator-initiated research funding support from Gilead Sciences and Abbvie. PD has received an investigator-driven grant from Gilead Sciences for unrelated work on hepatitis C and an untied educational grant from Reckitt Benckiser for unrelated work on the introduction of buprenorphine-naloxone into Australia. He has served as an unpaid member on an Advisory Board for an intranasal naloxone product.
Patient and public involvement: Patients and/or the public were not involved in the design, or conduct, or reporting or dissemination plans of this research.
Provenance and peer review: Not commissioned; externally peer reviewed.
Data availability: No additional data are publicly available. Researchers interested in data access or external collaboration can contact DO’K, daniel.okeefe@burnet.edu.au to clarify data access.
Data availability statement
No data are available.
Ethics statements
Patient consent for publication
Consent obtained directly from patient(s).
Ethics approval
This study involves human participants. Ethical approval for this study was provided by the Alfred Hospital Ethics Committee (HREC/16/Alfred/164). Participants gave informed consent to participate in the study before taking part.
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