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Title: The REACH study – Exploring patterns of Retention and Engagement Across specialised Care services of HIV positive patients in the United Kingdom Date of submission: March 2013 Proposed study team: Alison Evans, Fiona Burns, Caroline Sabin Background Retention in HIV care is vital for treatment success at both individual and population levels. Good engagement is associated with improved adherence, virological and immunological outcomes and survival.1 The proposed study is all the more timely in the current context of expanded HIV testing and the development of treatment as a form of secondary HIV prevention. Innovative models of care targeting early HIV identification must be complemented by strategies promoting long-term integration into care. Previous analysis of UK CHIC data has shown that 17.4% of HIV patients were potentially lost to follow up2 and analysis of SOPHID data indicated that nearly 5% of patients disengage with HIV care in any one-year and a further 4% are intermittent attendees.3 The proposed study will systematically define the complex patterns of HIV outpatient attendance in the UK. Patterns of attendance will be used to calculate the health and financial costs of disengaging or partially disengaging with care and undertake exploratory work to inform the design of interventions to meet the diverse needs of people living with HIV. Aims of proposal To examine HIV outpatient attendance patterns among people living with HIV, using data routinely collected in the UK CHIC study and to identify predictive factors of disengagement with specialised care services. The goal of our research is to develop intervention models to improve engagement in care, to be tested in future studies. Inclusion/exclusion criteria All patients under care at a participating UK CHIC centre from 2000 onwards. Planned analyses Until recently, the database did not capture clinic visits from all participating clinics, thus CD4 counts and viral loads have traditionally been used as surrogates of attendance. We will continue to use CD4 counts and viral loads in addition to other routine blood tests as surrogates of attendance. Where available, data on outpatient attendances will be used and will help to validate surrogate markers. Descriptive analysis We will describe HIV care attendance patterns, including the proportion of patients who disengage from care, the proportion who re-engage with care, the number of episodes of disengagement and typical length of episodes of disengagement. We will compare attendance patterns by demographic variables (age, gender, ethnicity, risk group). Predictive modelling We will use group-based trajectory modelling4 to identify clusters of individuals following similar, distinctive progressions of attendance over time. Logistic regression analyses will be used to predict the probability of an individual being within a particular group according to a particular set of risk factors and to explore factors associated with delayed linkage. This strategy will provide a unique, statistical snapshot of the key characteristics and behaviours of this complex population. We will compare attendance patterns across the UK and highlight whether future explorative work is needed beyond London clinics. Variables required Demographic (age, gender, ethnicity, risk group), clinical (prior AIDS, death), ART start/stop dates and reasons for discontinuation, laboratory markers with dates (CD4 counts, viral loads, toxicity markers), pregnancy. Any assessment of feasibility required None. Possible limitations/issues that should be considered when interpreting the findings Information on outpatient attendances is not provided by all clinics – analyses will use CD4 counts, viral loads and other routine blood tests as surrogates of attendance. A sensitivity analysis will be performed using data where outpatient attendances are available. Proposed time scale for analysis Next nine months to one year. Resources required (eg statistical support, database management) None. References 1 Gardner EM, et al. The Spectrum of Engagement in HIV Care and its Relevance to Test-and-Treat Strategies for Prevention of HIV Infection. Clinical Infectious Diseases. 2011;52(6):793–800. 2 Hill T, Bansi L, Sabin C, et al. Data linkage reduces loss to follow-up in an observational HIV cohort study. Journal of Clinical Epidemiology. 2010;63:1101-9. 3 Rice BD, Delpech VC, et al. Loss to Follow-Up Among Adults Attending Human Immunodeficiency Virus Services in England, Wales, and Northern Ireland. Sexually Transmitted Diseases. 2011; 38(8):685-90. 4 Nagin DS, Odgers CL. Group-Based Trajectory Modeling in Clinical Research. Annual Review of Clinical Psychology. 2010;6:109-138.