Research paper‘I didn’t want to let it go too far.’ The decisions and experiences of people who inject drugs who received a liver disease assessment as part of a liver health promotion campaign: The LiveRLife study
Introduction
People who inject drugs (PWID) are at an increased risk of liver disease resulting from chronic hepatitis C viral (HCV) infection and for some, co-occurring heavy alcohol use (Hajarizadeh, Grebely, & Dore, 2013). Chronic HCV infection is strongly linked to cirrhosis and hepatocellular carcinoma with rates projected to substantially increase in ensuing decades as cohorts with HCV infection age (Dore, Ward, & Thursz, 2014; Myers et al., 2014; Perz, Armstrong, Farrington, Hutin, & Bell, 2006). It is thus imperative that PWID understand liver assessment results in order to make informed decisions about their health.
In contrast to other countries (Barua et al., 2015, Marshall et al., 2016), Australia provides widespread access to HCV DAA treatment with no liver disease or alcohol/drug restrictions (Australian Government, 2015). Accordingly, there has been a marked increase in treatment uptake: ∼32,400 persons treated with direct-acting antivirals (DAAs) from March to December 2016 (∼14% of persons with chronic HCV infection) (The Kirby Institute, 2017). However, due to the relative novelty of interferon-free therapies, the rate of fibrosis progression following completion of DAA therapy, particularly in patients with cirrhosis and other liver disease progression co-factors, is uncertain (Feld & Foster, 2016). Liver disease assessments will therefore continue to hold a vital role in the monitoring of advanced disease in the interferon-free DAA era.
Alcohol consumption is also a major risk factor for chronic liver disease (Poynard, Bedossa, & Opolon, 1997; Wiley, McCarthy, Breidi, McCarthy, & Layden, 1998). Among PWID, binge drinking is independently associated with all-cause mortality, criminalization, and poor well-being (Dietze et al., 2013, Johnson et al., 2015). Given that alcohol use augments fibrosis progression in persons with HCV infection (Poynard et al., 1997, Wiley et al., 1998) improved health literacy in liver health among PWID is essential.
The LiveRLife campaign offered a liver disease assessment, i.e. transient elastography (TE), to PWID at drug and alcohol centres in New South Wales (NSW), Australia (Marshall et al., 2015). Operating similarly to an ultrasound, TE is a non-invasive, cost-effective procedure that quantifies the extent of liver stiffness (fibrosis) with accuracy comparable to biomarker tests (Castéra, et al., 2005; Friedrich-Rust, Poynard, & Castera, 2016). Acceptability of TE assessment (FibroScan® 402; Echosens; France) in LiveRLife was favourable — compared to liver biopsy and blood sample, TE was the most preferred option both pre-(66%) and post-(89%) TE (p < 0.001). Still, it was unclear how well participants understood their TE score in relation to their liver health, and whether interpretation of TE scores influenced health behaviours.
Health literacy is the ability to understand and utilise information to manage individual health. Lower health literacy levels are associated with increased hospitalisation and reduced treatment adherence (Baker et al., 2002; Kalichman, Ramachandran, & Catz, 1999). Persons from marginalized communities – limited education, poor English skills, and of low socioeconomic status – are most likely to have inadequate health literacy levels (Lynn Nielsen-Bohlman et al., 2004). It has been theorised that improved health literacy will enhance informed decision-making and the ability to navigate healthcare settings resulting in better individual and population-level health outcomes (Nutbeam, 2008). Increasing disease understanding among persons with low health literacy levels is needed (Gazmararian, Williams, Peel, & Baker, 2003) and to our knowledge, has yet to be investigated with the PWID population.
From a clinical perspective, health literacy is a measurable risk factor that emphasizes the relationship of functional literacy (e.g. reading level) to medical adherence (Nutbeam, 2000, Nutbeam, 2008). In contrast, the public health approach is wide-ranging: health literacy is an asset to manage lifestyle factors beyond the clinical setting (Nutbeam, 2008, Peerson and Saunders, 2009, Williams et al., 1995). Nutbeam’s health literacy model (Nutbeam, 2008) utilises a ten-step, public health framework (Fig. 1) wherein individuals address lifestyle practices that enable and impede healthy behaviours. Nutbeam’s model was selected to examine LiveRLife participant understanding of liver health because participants may have engaged in health behaviours external to the clinic and we sought to examine how PWID conceptualised liver disease assessments in relation to other life experiences.
The aim of this qualitative study was to explore the decisions and experiences of participants who received a liver disease assessment, including interpretation of TE score and subsequent health behaviours, using Nutbeam’s framework of health literacy (Nutbeam, 2008). Given that Nutbeam’s conceptual model is not yet fully developed and has yet to be used with marginalised population groups, study findings will contribute to this health literacy framework. In addition, findings will inform targeted educational strategies for PWID and more specifically, underscore how to better facilitate ‘linkage to HCV care’ for PWID with, and at-risk of, advanced liver disease.
Section snippets
LiveRLife study design
LiveRLife is an open observational cohort study implemented from May to October 2014 at two regional opioid substitution treatment (OST) clinics, one urban medically-supervised injecting centre (MSIC), and one urban primary healthcare clinic in NSW, Australia (Marshall et al., 2015). Study aims were to measure liver disease and HCV knowledge, TE acceptability, and intent and willingness to initiate HCV therapy among PWID. Evidence was collected from a baseline questionnaire (e.g. demographics,
Results
Thirty-three semi-structured interviews took place with 11 participants from each site. Two interviews were conducted by telephone. Mean interview time was 30 min. In this sample, 21% (n = 7) were female, median age was 48 years, and 21% (n = 7) were Aboriginal and/or Torres Strait Islander. Based on LiveRLife baseline data, 88% (n = 29) had government assistance as primary income, 70% (n = 23) did not complete high school, 61% (n = 20) had spent time in prison, and 73% (n = 24) had injected drugs in the
Discussion
This study applied Nutbeam’s theory of health literacy (Nutbeam, 2008) to a tailored liver health educational intervention, the LiveRLife campaign, with attention to PWID understanding of liver disease. This study extends the application of a conceptual framework that is not yet fully developed (Nutbeam, 2008) to a marginalised population and stigmatised condition. Further, results identify gaps in PWID literacy relating to HCV infection and point to particular issues relevant for healthcare
Financial support
The study was funded from Merck Sharp & Dohme, Australia. The Centre for Social Research in Health is supported by a grant from the Australian Government Department of Health. The Kirby Institute is funded by the Australian Government Department of Health. The views expressed in this publication do not necessarily represent the position of the Australian Government. ADM holds a University International Postgraduate Award from UNSW Australia and is also supported by the CanHepC Trainee Program
Conflict of interest
JG is a consultant/advisor and has received research grants from Abbvie, Bristol Myers Squibb, Cepheid, Gilead Sciences and Merck. GJD is a consultant/advisor and has received research grants from Abbvie, Bristol Myers Squibb, Gilead, Merck, Janssen and Roche. The remaining authors do not have a conflict of interest.
Acknowledgements
Study authors would like to thank participants for their contribution to this research. We would also like to specifically thank the clinic investigators at each site: Trish Collie (Coffs Harbour Drug and Alcohol Service, NSW Australia), Susan Hazelwood (Newcastle Pharmacotherapy Service, NSW Australia), and William Wood (Sydney Medically Supervised Injected Centre, NSW Australia).
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