Conceptualising engagement with HIV care for people on treatment: the Indicators of HIV Care and AntiRetroviral Engagement (InCARE) Framework.

BACKGROUND: As the crisis-based approach to HIV care evolves to chronic disease management, supporting ongoing engagement with HIV care is increasingly important to achieve long-term treatment success. However, 'engagement' is a complex concept and ambiguous definitions limit its evaluation. To guide engagement evaluation and development of interventions to improve HIV outcomes, we sought to identify critical, measurable dimensions of engagement with HIV care for people on treatment from a health service-delivery perspective. METHODS: We used a pragmatic, iterative approach to develop a framework, combining insights from researcher experience, a narrative literature review, framework mapping, expert stakeholder input and a formal scoping review of engagement measures. These inputs helped to refine the inclusion and definition of important elements of engagement behaviour that could be evaluated by the health system. RESULTS: The final framework presents engagement with HIV care as a dynamic behaviour that people practice rather than an individual characteristic or permanent state, so that people can be variably engaged at different points in their treatment journey. Engagement with HIV care for those on treatment is represented by three measurable dimensions: 'retention' (interaction with health services), 'adherence' (pill-taking behaviour), and 'active self-management' (ownership and self-management of care). Engagement is the product of wider contextual, health system and personal factors, and engagement in all dimensions facilitates successful treatment outcomes, such as virologic suppression and good health. While retention and adherence together may lead to treatment success at a particular point, this framework hypothesises that active self-management sustains treatment success over time. Thus, evaluation of all three core dimensions is crucial to realise the individual, societal and public health benefits of antiretroviral treatment programmes. CONCLUSIONS: This framework distils a complex concept into three core, measurable dimensions critical for the maintenance of engagement. It characterises elements that the system might assess to evaluate engagement more comprehensively at individual and programmatic levels, and suggests that active self-management is an important consideration to support lifelong optimal engagement. This framework could be helpful in practice to guide the development of more nuanced interventions that improve long-term treatment success and help maintain momentum in controlling a changing epidemic.

Measuring patient engagement with HIV care in sub-Saharan Africa: a scoping study.

INTRODUCTION: Engagement with HIV care is a multi-dimensional, dynamic process, critical to maintaining successful treatment outcomes. However, measures of engagement are not standardized nor comprehensive. This undermines our understanding of the scope of challenges with engagement and whether interventions have an impact, complicating patient and programme-level decision-making. This study identified and characterized measures of engagement to support more consistent and comprehensive evaluation. METHODS: We conducted a scoping study to systematically categorize measures the health system could use to evaluate engagement with HIV care for those on antiretroviral treatment. Key terms were used to search literature databases (Embase, PsychINFO, Ovid Global-Health, PubMed, Scopus, CINAHL, Cochrane and the World Health Organization Index Medicus), Google Scholar and stakeholder-identified manuscripts, ultimately including English evidence published from sub-Saharan Africa from 2014 to 2021. Measures were extracted, organized, then reviewed with key stakeholders. RESULTS AND DISCUSSION: We screened 14,885 titles/abstracts, included 118 full-texts and identified 110 measures of engagement, categorized into three engagement dimensions ("retention," "adherence" and "active self-management"), a combination category ("multi-dimensional engagement") and "treatment outcomes" category (e.g. viral load as an end-result reflecting that engagement occurred). Retention reflected status in care, continuity of attendance and visit timing. Adherence was assessed by a variety of measures categorized into primary (prescription not filled) and secondary measures (medication not taken as directed). Active self-management reflected involvement in care and self-management. Three overarching use cases were identified: research to make recommendations, routine monitoring for quality improvement and strategic decision-making and assessment of individual patients. CONCLUSIONS: Heterogeneity in conceptualizing engagement with HIV care is reflected by the broad range of measures identified and the lack of consensus on "gold-standard" indicators. This review organized metrics into five categories based on the dimensions of engagement; further work could identify a standardized, minimum set of measures useful for comprehensive evaluation of engagement for different use cases. In the interim, measurement of engagement could be advanced through the assessment of multiple categories for a more thorough evaluation, conducting sensitivity analyses with commonly used measures for more comparable outputs and using longitudinal measures to evaluate engagement patterns. This could improve research, programme evaluation and nuanced assessment of individual patient engagement in HIV care.