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

Abstract

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 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 gained 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 critical 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

“…While the search for a unifying measure reflective of engagement was unsuccessful, this indicates the complexity of the concept [ 17 ]. Engagement is multi‐dimensional, with retention, adherence and active self‐management all crucial to long‐term, sustained treatment success [ 39 ]. Particularly for the purposes of making decisions on individual patient care and research to develop and test new interventions, evaluating all dimensions may be more valuable than hiding the heterogeneity with summary measures.…”

“…The concept of “engaging with care” was framed as a dynamic behaviour, reflected by observable, and thus measurable, activities: retention (interaction with health services), adherence (pill dosing behaviour) and active self‐management (ownership and self‐management of care), based on the “Indicators of HIV Care for Antiretroviral Engagement (InCARE)” framework [ 39 ]. These dimensions informed the search strategy and categorization of identified measures of engagement with HIV care.…”

“…The data extracted from each literature source included study information (including the year of publication, country, setting, participant characteristics and methods) and information on the measures of engagement (including information on the measure, such as definition, data collection, calculation and interpretation; evaluation of the measure's performance in predicting treatment outcomes; and how the measure was used or recommended to be used—Table S3 ). The extracted data were combined and organized by individual measure and categorized according to the retention, adherence and active self‐management dimensions of the InCARE framework (Figure 1 ) [ 39 ].…”

“… Indicators of HIV Care for Antiretroviral Engagement (InCARE) framework, used to direct the search and categorization stages of the scoping study for measures of engagement with HIV care in sub‐Saharan Africa [ 39 ], drawing from multiple definitions of retention [ 5 , 42 , 43 ], adherence [ 44 , 45 ], active self‐management [ 24 , 46 , 47 ] and treatment outcomes [ 48 , 49 , 50 ]. …”

Reasons for disengagement from antiretroviral care in the era of “Treat All” in low‐ or middle‐income countries: a systematic review

“…While our definition (>30 days without ART) is clear and client-centred, it can be hard to determine from clinic records which are based on attendance at clinic visits and pharmacy pick-ups. Other studies and reviews have adopted other definitions of engagement [39]. Studies often combined results from groups of people with experience of disengagement and those who had remained in care (we included these papers if more than half people had experience of disengagement), and in some cases, definitions of disengagement were overly permissive (e.g.…”