Priority populations' experiences of isolation, quarantine and distancing for COVID-19: protocol for a longitudinal cohort study (Optimise Study).

INTRODUCTION: Longitudinal studies can provide timely and accurate information to evaluate and inform COVID-19 control and mitigation strategies and future pandemic preparedness. The Optimise Study is a multidisciplinary research platform established in the Australian state of Victoria in September 2020 to collect epidemiological, social, psychological and behavioural data from priority populations. It aims to understand changing public attitudes, behaviours and experiences of COVID-19 and inform epidemic modelling and support responsive government policy. METHODS AND ANALYSIS: This protocol paper describes the data collection procedures for the Optimise Study, an ongoing longitudinal cohort of ~1000 Victorian adults and their social networks. Participants are recruited using snowball sampling with a set of seeds and two waves of snowball recruitment. Seeds are purposively selected from priority groups, including recent COVID-19 cases and close contacts and people at heightened risk of infection and/or adverse outcomes of COVID-19 infection and/or public health measures. Participants complete a schedule of monthly quantitative surveys and daily diaries for up to 24 months, plus additional surveys annually for up to 48 months. Cohort participants are recruited for qualitative interviews at key time points to enable in-depth exploration of people's lived experiences. Separately, community representatives are invited to participate in community engagement groups, which review and interpret research findings to inform policy and practice recommendations. ETHICS AND DISSEMINATION: The Optimise longitudinal cohort and qualitative interviews are approved by the Alfred Hospital Human Research Ethics Committee (# 333/20). The Optimise Study CEG is approved by the La Trobe University Human Ethics Committee (# HEC20532). All participants provide informed verbal consent to enter the cohort, with additional consent provided prior to any of the sub studies. Study findings will be disseminated through public website (https://optimisecovid.com.au/study-findings/) and through peer-reviewed publications. TRIAL REGISTRATION NUMBER: NCT05323799.

The eliminate hepatitis C (EC) experience study: baseline characteristics of a cohort of people who inject drugs in Melbourne, Australia.

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.

Inclusion of Cultural and Linguistic Diversity in COVID-19 Public Health Research: Research Design Adaptations to Seek Different Perspectives in Victoria, Australia.

Participation of people from culturally and linguistically diverse (CALD) communities in public health research is often limited by challenges with recruitment, retention and second-language data collection. Consequently, people from CALD communities are at risk of their needs being marginalised in public health interventions. This paper presents intrinsic case analyses of two studies which were adapted to increase the cultural competence of research processes. Both cases were part of the Optimise study, a major mixed methods research study in Australia which provided evidence to inform the Victorian state government's decision-making about COVID-19 public health measures. Case study 1 involved the core Optimise longitudinal cohort study and Case study 2 was the CARE Victorian representative survey, an Optimise sub-study. Both case studies engaged cultural advisors and bilingual staff to adjust the survey measures and research processes to suit target CALD communities. Reflexive processes provided insights into the strengths and weaknesses of the inclusive strategies. Selected survey results are provided, demonstrating variation across CALD communities and in comparison to participants who reported speaking English at home. While in most cases a gradient of disadvantage was evident for CALD communities, some patterns were unexpected. The case studies demonstrate the challenge and value of investing in culturally competent research processes to ensure research guiding policy captures a spectrum of experiences and perspectives.

Recruiting and retaining community-based participants in a COVID-19 longitudinal cohort and social networks study: lessons from Victoria, Australia.

BACKGROUND: Longitudinal studies are critical to informing evolving responses to COVID-19 but can be hampered by attrition bias, which undermines their reliability for guiding policy and practice. We describe recruitment and retention in the Optimise Study, a longitudinal cohort and social networks study that aimed to inform public health and policy responses to COVID-19. METHODS: Optimise recruited adults residing in Victoria, Australia September 01 2020-September 30 2021. High-frequency follow-up data collection included nominating social networks for study participation and completing a follow-up survey and four follow-up diaries each month, plus additional surveys if they tested positive for COVID-19 or were a close contact. This study compared number recruited to a-priori targets as of September 302,021, retention as of December 31 2021, comparing participants retained and not retained, and follow-up survey and diary completion October 2020-December 2021. Retained participants completed a follow-up survey or diary in each of the final three-months of their follow-up time. Attrition was defined by the number of participants not retained, divided by the number who completed a baseline survey by September 302,021. Survey completion was calculated as the proportion of follow-up surveys or diaries sent to participants that were completed between October 2020-December 2021. RESULTS: At September 302,021, 663 participants were recruited and at December 312,021, 563 were retained giving an overall attrition of 15% (n = 100/663). Among the 563 retained, survey completion was 90% (n = 19,354/21,524) for follow-up diaries and 89% (n = 4936/5560) for monthly follow-up surveys. Compared to participants not retained, those retained were older (t-test, p <  0.001), and more likely to be female (χ2, p = 0.001), and tertiary educated (χ2, p = 0.018). CONCLUSION: High levels of study retention and survey completion demonstrate a willingness to participate in a complex, longitudinal cohort study with high participant burden during a global pandemic. We believe comprehensive follow-up strategies, frequent dissemination of study findings to participants, and unique data collection systems have contributed to high levels of study retention.

Analysis of four syringe dispensing machine point-of-access data 2017-2020 in Melbourne, Australia: machine utilisation and client demographics.

BACKGROUND: Australian needle and syringe distribution occurs via a mix of modalities, including syringe dispensing machines (SDMs). SDMs are electronic vending machines providing (often) 24-h access to needles/syringes and may attract greater numbers of people who are younger, female, and/or have limited connection to health care services compared to individuals accessing fixed-site needle and syringe programs (NSPs). However, validating the demographic characteristics of SDM clients has proven difficult in previous research. METHODS: In this paper, we analyse SDM order and client demographic data from four SDMs located in South-East Melbourne, Australia, and compare this against the managing fixed-site NSP between May 2017 and December 2020. SDM data were collected via a novel 0-9 numeric keypad input tool. Via the tool, SDM clients were requested to input their categorised age, gender and postcode. Given the novelty of the tool, we evaluate the feasibility of the data collection method. We analysed data according to: (1) total SDM orders made, (2) estimated 'unique SDM presentations' and (3) describing the demographics of unique SDM clients. Importantly, we noted substantial invalid demographic data, and consequently, severely restricted data for analysis. RESULTS: There were 180,989 SDM orders made across the four SDMs to an estimated 90,488 unique SDM presentations. There was little variation in unique presentations across days of the week, but 69% occurred out of NSP operating hours. Across the study period, the SDMs distributed 66% of the number of syringes distributed by the fixed-site NSP. Due to invalid demographic data, our restriction method provided only 10,914 (6% of all data) unique presentations for analysis. There were some demographic differences between SDM and NSP client, but these should be treated with caution. CONCLUSIONS: The data collection tool provides a novel means of comparing SDM and fixed-site presentations, demonstrating the substantial expansion of service via the SDMs. However, the validity of the demographic data was highly questionable and requires significant data coding, meaning it is not feasible for community NSPs. While we recommend the inclusion of automatically collected SDM order data, the use of a 0-9 numeric keypad to collect demographic data-while an innovation-requires alteration to support NSP data.

Time-series analysis of presentations to four syringe dispensing machines and a needle and syringe programme during COVID-19 lockdowns in Melbourne, Australia.

BACKGROUND: Australian harm reduction services are provided via a mix of modalities, including fixed-site needle and syringe programmes (NSP) and syringe-dispensing machines (SDMs). SDMs are cost-effective and provide 24-h anonymous access to needles/syringes, often to underserved geographic areas, and can attract clientele who may choose not to use NSPs. The introduction of COVID-19 control measures saw disruptions and adaptations to the provision of harm reduction services. It is possible that SDMs filled the gap in otherwise disrupted harm reduction services in Melbourne. In this paper, we use data from four SDMs and an NSP to explore changes to harm reduction usage during periods of COVID-19 lockdowns in Melbourne, Australia, in 2020. METHODS: Our data span September 2017-December 2020. We analysed daily counts of SDM use and monthly counts of NSP use, according to unique presentations to both. Auto-regressive integrated moving average (ARIMA) time-series models were fitted to the data with the effects of lockdowns estimated via a step function. RESULTS: Across the study period, we estimated 85,851 SDM presentations and 29,051 NSP presentations. Usage across both the SDMs and the NSP declined during the COVID-19 lockdowns, but only the decline in SDM usage was significant in ARIMA analysis. CONCLUSIONS: The slight, but significant decline in SDM use suggests barriers to access, though this may have been mitigated by SDM users acquiring needles/syringes from other sources. The decline, however, may be a concern if it led to lowered needle/syringe coverage and a subsequent increase in injecting risk. Further work is needed to properly explore potential changes in preference for needle/syringe acquisition site and associated barriers. Importantly, this work adds to the body of literature around the impacts of COVID-19 on harm reduction provision and potential areas of improvement.

Exploring hepatitis C virus testing and treatment engagement over time in Melbourne, Australia: a study protocol for a longitudinal cohort study (EC-Experience Cohort study).

INTRODUCTION: The advent of direct acting antiviral therapy for hepatitis C virus (HCV) means the elimination of HCV is possible but requires sustained effort to achieve. Between 2016 and 2019, 44% of those living with HCV were treated in Australia. However, treatment uptake has declined significantly. In Australia, people who inject drugs (PWID) are the population most at risk of HCV acquisition. Eliminating HCV in Australia will require nuanced understanding of the barriers to HCV treatment experienced by PWID and tailored interventions to address these barriers. The EC-Experience Cohort study aims to explore the barriers and enablers reported by PWID to engagement in HCV care. METHODS AND ANALYSIS: The EC-Experience Cohort study is a prospective cohort of PWID, established in Melbourne, Australia in 2018. Participants are assigned into three study groups: (1) those not currently engaged in HCV testing; (2) those diagnosed with HCV but not currently engaged in treatment and (3) those completed treatment. Participants complete a total of four interviews every 6 months across an 18-month study period. Predictors of experience of key outcome events along the HCV care cascade will be explored over time. ETHICS AND DISSEMINATION: Ethical approval for the EC-Experience Cohort study was obtained by the Alfred Hospital Ethics Committee in Melbourne, Australia (Project Number: HREC/16/Alfred/164). All eligible participants are assessed for capacity to consent and partake in a thorough informed consent process. Results from the EC-Experience Cohort study will be disseminated via national and international scientific and public health conferences and peer-reviewed journal publications. Data from the EC-Experience Cohort study will improve the current understanding of the barriers to HCV care for PWID and guide the tailoring of service provision for specific subgroups. Understanding the barriers and how to increase engagement in care of PWID is critical to achieve HCV elimination goals.