Future destinations and social inclusion scoping review: how people cured of hepatitis C (HCV) using direct- acting antiviral drugs progress in a new HCV-free world

The initial search was conducted in November 2019 from five databases: Ovid Medline, Ovid Embase, Web of Science (core collection), Sociological Abstracts and CINAHL. A grey literature search was conducted using Google Scholar. Search terms were customised for each database. Reference lists of articles identified as suitable were hand screened for any additional relevant articles. Initial searches showed that non-clinical benefits evidenced in the interferon-era related to recovery from substance use and transformation of quality of life, wellbeing and a move beyond substance use. The search strategy was refined to include terms relating to these non-clinical outcomes. The search strategy was repeated in December 2021 to capture any recently published evidence. Search terms are shown in Additional file 2.

Following the search all articles identified were transferred to EndNote X9 and duplicates removed. Titles and abstracts were screened by two authors (AR and SRD) for assessment against the eligibility criteria. Articles identified as potentially relevant were then subject to full article screening independently by two authors (AR and SRD) where there was disagreement this was resolved through discussion and consensus reached. A third author (JFD) was available for consultation; however this was not necessary during this process.

Two thousand one hundred forty-eight items were title screened from the database searches, 14 from grey literature and 11 from hand searching. Duplicate results were excluded resulting in 2095 articles for title and abstract screening. After title and abstract screening 88 articles remained for full article screening. The full article review yielded 35 papers for data extraction. No articles were excluded during data extraction as this is a scoping review and therefore a quality assessment was not conducted. A PRISMA diagram of study selection is shown in Fig. 1 below [30, 31].

Data relating to each article including geographical location, methods and key findings were extracted and recorded in an excel spreadsheet through consensus of two authors (AR and SRD). The data extracted is shown in Additional file 3. In categorising the literature there is a risk that generalisations are made, however the approach provides a framework for thematic analysis which is described below.

We used an excel sheet to code each article by intervention and non-clinical outcome(s) and recovery capital domain. Two authors (AR and SRD) reviewed each article and a consensus reached as to relevant coding.

We clustered the non-clinical outcomes identified in the descriptive analysis of the selected articles by recovery capital domain to explore potential mechanisms for DAAs to support a recovery journey. We developed a thematic synthesis based on the four over arching themes of recovery capital: physical, cultural, social and human capital.

“Hep C’s like the common cold for the junkie” [32].

HCV may act as a symbolic marker of injecting drug use, providing an identity of “junkie”, “dirty”, “risky” and beyond the control of the individual. HCV is framed as a shameful and stigmatising disease but also one of passivity and helplessness [33‐35]. People who inject drugs break the norms of a society in which drug use is perceived as wrong; as a result of a flawed character resulting in exclusion from wider society; the spoiled identity and the second class citizen [34]. Experiences of stigma and discrimination are common and clearly documented for people in both the interferon [19, 36‐38] and DAA era [39]; this creates strong barriers to accessing HCV care and treatment.

Harris [40] and Dowsett et al. [33] describe a range of reactions to a HCV diagnosis from devastating for some to little concern for others. There is a clear narrative in the interferon-era documenting a culture of inevitability of HCV in this patient group. HCV is described as being largely socially accepted and expected within injecting drug using social networks; HCV is a burden to bear and this may reinforce a stigmatised identity [26, 33, 37, 38, 40]. This narrative has not changed with advances in treatment [32, 41].

Competing priorities may be the biggest challenge to overcome this perceived inevitability. This is especially relevant for those who are asymptomatic and may provide an explanation for low engagement by some despite the availability of DAAs [32, 41‐44].

Awareness of HCV status was found to reduce quality of life due to the psychological impact of receiving a positive diagnosis and the effect of labelling with a stigmatised disease [45]. The systematic review by Dowsett et al. [33] describes the experiences of living with HCV and the emotional responses to the stigma experienced to include shame, feelings of being “dirty” and rejection, resulting in reduced quality of life. These responses were also described in Harris’s [35] qualitative study and demonstrate the lack of movement in social acceptance of those who use drugs. This is reinforced by Whiteley et al. [46] who describe the “cultural lag” of DAAs ability to influence the stigma surrounding HCV diagnosis and treatment which is still framed in the interferon-era.

Rhodes et al. [19] described the transformative potential in the interferon-era and the paradox of therapeutic citizenship dividing those who could present as responsible patients suitable for treatment and those who continue to use drugs as beyond hope. Restrictions on access to HCV treatment have reinforced pervasive social narratives about worthiness of those who use drugs for treatment for hepatitis C, with patients reporting gratitude rather than expectation of treatment [19, 42]. This narrative has evolved with treatment options from perceived inability to comply in the interferon-era to questions of cost of treatment and merit to receive scarce resources in the DAA era [32, 39, 41, 44, 46].

Rance et al. [47] describe the politics surrounding pharmaceutical citizenship in the DAA-era, where patient friendly DAAs are heralded as important for the HCV community to open up access and increase inclusion. The transformation in HCV care has been enthusiastically embraced by clinicians, however, has yet to be widely accepted by patients due to a culture of caution, confusion and doubt [27, 39]. At a patient level there are descriptions of disappointment and scepticism that a pill could deliver the hoped for social transformation against a back drop of complex and long standing social problems and stigma [41, 47].

The legacy of the interferon-era continues to shape how people who use drugs perceive HCV, their expectation and experience of treatment [39, 41]. The interferon-era was synonymous with debilitating side effects and as a result patients are described to have anticipation of a similar experience with DAAs [27, 41, 46]. Whilst the expectation deters some from treatment the lack of side effects from DAAs is almost seen as problematic for others, who describe side effects as practically desirable, as evidence that treatment is working and “no pain, no gain” [46]: A way of earning a cure. This reinforces the culture that patients must be deserving of treatment.

Cultural barriers remain for people with HCV despite the paradigm shift in care. Cure of HCV with DAAs does however, have the potential to increase cultural recovery capital. As HCV treatment becomes more inclusive, with fewer barriers and restrictions for use this may begin to address some of the beliefs of inevitability and address some of the stigma surrounding HCV.

For some, the stigma associated with HCV is a motivating factor for undergoing treatment. Treatment may provide the opportunity to move away from a stigmatised identity and to restore social membership. This may be reinforced by the opportunity to strengthen relationships with partners and family. This was demonstrated in both the interferon-era [13, 48] and the DAA-era [48‐52]. Doing so however, comes at a personal cost with individuals reporting negative experiences from their interactions with the complex healthcare system in both the interferon-era [27, 33, 38, 40] and DAA-era [27, 33, 41, 44].

Goodyear et al. [52] found that for some, treatment with DAAs fell short of the desired social transformation hoped for. This is attributed to the remaining socio-structural challenges and stigma faced such as those as a result of substance use, poverty and other health conditions such as HIV. However, for others the reduction of internalised stigma and the opportunity for new identities and social connections supported a recovery journey.

Falade-Nwulia et al. [1] describe the influence of the peer network related to health behaviours of the individual in the DAA-era through knowledge exchange and the influence of the social norms. Social networks can facilitate HCV treatment or be a barrier to engagement. Whilst those treated with DAAs are keen to share positive experiences and encourage others to engage there is trepidation to share this information due to the return to a past stigmatised identity [49].

Cure of HCV is described as an opportunity for a new identity, one of being “clean” and a break from their past using identity across both treatment regimes [35, 49]. For those undergoing treatment with DAAs, social redemption is described as a key motivating factor [51]. When HCV cure is achieved, this is suggested to translate to a change in self-identity resulting in the formation of new social networks away from injecting associations, supporting a recovery journey in the IFN-era [38]. Treatment with DAAs is suggested to reinforce the pursuit of a recovery journey with individuals taking steps to reduce the risk of re-infection [51‐54].

Rance et al. [18] describe the benefits of introducing HCV care into opiate substitution therapy (OST) clinics during the interferon-era to provide a holistic form of care. The study found that this shifted the dynamics of the relationship between staff and patients, and this therapeutic relationship opened up opportunities for transformation and a shift in identity towards that of “non-addicts” from the stigmatised “drug user identity”. The clinician-patient relationship required in the interferon-era provided broader care beyond the virus and there are concerns that the reduced relationship in the DAA-era may be detrimental to these social supports [14]. Goodyear et al. [41] identified further barriers to care in the DAA era based around perceived gate keeping and lack of information from care providers. These concerns may be addressed through comprehensive health and social services in the DAA-era [41, 44, 51].

Concerns about HCV transmission is identified as a motivating factor to undergo treatment in order to not pass it on to others across the paradigm shift [33, 49, 55]. Richmond et al. [49] describes the reduced psychological burden for individuals cured with DAAs through feeling “normal” and not an infectious risk to others. This may encourage the re-establishment of closer relationships or provide confidence to build new ones.

HCV cure may increase social recovery capital through the strengthening of relationships, the building of new non-injecting social networks and the removal of the risk of HCV transmission to others.

A focus on the priorities and wishes of people who use drugs from HCV treatment could hold the answer to widening access and overcoming remaining barriers. Madden et al. [56] propose that in the DAA-era people who inject drugs may be looking for a cure beyond HCV; the opportunity for social redemption and an untainted identity away from the stigmatising disease. This view is shared by Harris [48], Williams et al. [51] and Bryant et al. [27] who describe the promise of DAA treatment and its potential of new opportunities of a new identity or “normality”.

Richmond et al. [49] describe the psychological relief for those cured of HCV with DAAs, even if they did not experience physical symptoms. The removal of the uncertainty of HCV infection and its potential to impact on future health is seen as a positive benefit, with hope for the future.

Treatment with DAAs has been shown to improve physical health and wellbeing which support feelings of pride and achievement of obtaining a cure and hope for a better life and future aspirations [52].

Non-clinical outcomes such as improved wellbeing, increase in self-esteem and the ability to plan and look to the future are beginning to emerge as a result of treatment with DAAs [39, 51, 57].

Cure of HCV may increase human recovery capital. The opportunity to increase hope and aspirations for the future and the potential for a new identity or recovery of an old valued identity.

The psychological, physical and social aspects of living with HCV burden are widely documented [33, 38]. HCV can impact on daily life, quality of life and access to sources of physical capital due to the symptoms of the disease [33, 52]. People living with chronic HCV experience a range of physical symptoms such as fatigue, weakness, nausea, pain, headaches and psychological symptoms such as depression, anxiety and irritability [33, 55, 58, 59]. The physical and mental fatigue arising from these symptoms has been found to frame a person’s social interactions and activities and disrupt daily life [58, 59]. The resulting changes to employment status and social roles have been described as having implications for finances and morale.

The improvements in physical health as a result of successful DAA treatment provides support in obtaining and maintaining employment [52]. Building opportunities for social activities, education and employment may provide opportunity for a new identity or reclaiming old valued identities lost as a result of changes to employment and social roles.

Cure of HCV provides an opportunity to increase physical recovery capital by easing physical and psychological symptoms experienced as a result of infection. This may increase opportunities for social activities, employment and education.

The purpose of a scoping review is to provide an overview of a particular topic and therefore includes multiple types of work. As such an assessment of the quality of the work is not conducted and therefore there are limitations in the applicability to practice, where concrete guidance may be required. We did not register the protocol for our scoping review which limits transparency and replicability. Our work only identified 35 studies over a 40 year period from countries with a western culture (Australia, New Zealand, Europe and the USA). The differing health systems, policies and treatment practices may impact significantly on the findings of the review. Future work should consider broadening the search criterion to include other health conditions, such as HIV, which may provide valuable transferable knowledge and understanding. Our review also suggests that there is a weighting towards some recovery capital domains over others, the weighting of the non-clinical outcomes is towards social and cultural domains which are external resources that may not be under the influence of the individual. These limitations combined may therefore affect the generalisability of the conclusions drawn.