Clinical and public health approaches have shifted from treating HIV as an acute emergency to viewing it as a chronic disease where the patient takes the primary role in the management of their condition and differentiated service delivery models reduce contact with both facilities and providers(5, 51). This makes maintaining engagement with HIV care more crucial to achieve treatment success(7, 8) and highlights the importance of person-centred support for a person’s lifelong engagement with HIV care(7–9). We developed a pragmatic framework to conceptualise engagement for people on ART for use by health services to comprehensively evaluate engagement, understand programmes and target interventions to optimise engagement with HIV care.
Utility of the InCARE framework for research, implementing programmes and clinical management
Engagement as a behaviour rather than a characteristic of individuals
This framework recognises that maintaining engagement with care is an observable behaviour, distinct from the engagement required to initiate ART(41). Understanding engagement as a behaviour, rather than a static patient phenotype, shifts the focus away from a dichotomous ‘good’ or ‘bad’ patient categorisation. This normalises the cycle of engagement as people disengage and re-engage with care over time(19, 20). Suboptimal engagement can then be understood as an expected reality and managed with compassion rather than punished as a failure. This also shifts the health service’s focus to a person-centred approach, facilitating the treatment of patients as active participants in their treatment rather than passive recipients of care who need a paternalistic relationship with the system to enforce engagement(31, 52).
Engagement as a dynamic process rather than a linear cascade
The cascade approach to HIV engagement has served as a framework for identifying gaps in coverage and service performance(53). It has contributed to achieving some of the ‘low hanging fruit’ in the progress of HIV services such as improved standardisation of measures of retention and scale up of ART(10). However, it has been criticised as overly linear, unidirectional, and for not accounting for the lived realities of the complex patient journey where patients move in and out of care over time(19, 20, 54, 55). Ehrenkranz et al proposed a more cyclical cascade to evaluate the retention dimension at a population level more accurately by structuring the cascade to reflect “actual … behaviour” and making the concept of the cycle of disengagement and re-engagement explicit and expected(34). This approach is well-suited to monitoring national and global programmes(56).
The InCARE framework attempts to develop this further and describes engagement as a dynamic process where patients move in and out of the desired ‘fully engaged’ state(57) depending on their fulfilment of the three dimensions of retention, adherence and active self-management. This conceptualisation focuses on the relationship between elements of the behaviour to complement the cascade approach, which describes the timing and sequence of transitions between states along a cascade.
Engagement as a mediator of influential factors on treatment outcomes
Engagement behaviour is an observable part of a complex process influenced by many layers within and outside of a person’s control: engagement is negotiated between the patient, their experience of HIV and the health system, and their context of competing priorities(10, 41). The InCARE framework places engagement as distinct from influential individual, contextual and health system factors that influence this behaviour(58). The framework also distinguishes between engagement behaviour and treatment outcomes such as virologic suppression or health status(59). This distinction helps to disentangle the effect that changes in influential factors (such as addressing mental health issues, reducing community stigma or extending clinic opening hours) have on the dimensions of engagement, on engagement overall and ultimately on treatment success.
The scale up of ART has resulted in massive public health gains(15), but has shifted the gaps from treatment access to engagement as the key modifier of the success(4) – a much more complicated outcome to achieve. As incremental gains in treatment success become harder to achieve, it becomes more difficult to show efficacy of interventions if only viral outcomes are considered(60). Recognising engagement and its dimensions as a measurable state on the path to treatment success(4) could help to evaluate the impact of interventions more accurately and develop more nuanced services targeted to leverage a person’s strengths and to meet their needs. It could also help to identify influential factors to intervene on and understand how they ultimately result in improvements in treatment success.
Engagement as a comprehensive set of measurable dimensions
The InCARE framework describes engagement as comprised of three measurable dimensions that reflect interactions with both the services and treatment itself: retention, adherence and active self-management. To achieve long-term treatment success, a person must interact with health services to receive ART (retention), take their treatment according to the schedule prescribed by the clinician so that it can work optimally (adherence) and be actively committed to managing their health between infrequent facility visits (active self-management). The InCARE framework situates each dimension as necessary, but not on its own sufficient, to sustain treatment success over time.
While the concepts of retention and adherence are correlated, the InCARE framework places them as distinct dimensions within engagement behaviour, with retention reflecting periodic engagement with healthcare services and adherence reflecting daily engagement with treatment itself. People can be in one state without necessarily being in the other(61): for example, people are commonly considered ‘retained’ (medication was dispensed and a viral load measured) but not ‘fully adherent’ (viral load is unsuppressed). Conversely, patients may struggle with barriers to attending appointments but manage their daily adherence well(21). Suboptimal retention or adherence reflect different issues and require different approaches to improve treatment outcomes, thus the differentiation is important.
Treatment success needs to be sustained over a lifetime of ART to prevent drug resistance and facilitate the benefits that ART provides(72, 73). While retention and adherence may be sufficient to result in treatment success at a particular moment in a person’s treatment journey (reflected for example by a suppressed viral load), both dimensions of engagement are vulnerable to the many shifting individual, contextual and health system factors (and the dynamics between them(58)) which combine to tip people towards or away from optimal engagement with care(21). Retention and adherence have also been criticised for not fully defining the multi-dimensional “care engagement process”(64, 65).
Maintenance of engagement, and subsequent sustained treatment success, includes an element of ownership, active involvement and self-management of care between facility visits – termed ‘active self-management’ in the InCARE framework. Along with retention and adherence, self-management is seen as essential in lifelong treatment(40), as the health system’s role in achieving ART success is limited to a few interactions with a person over the course of a year and individuals are ultimately responsible for the lifetime task of day-to-day management of their condition (whether they are managing it well or not, they are in fact managing their health)(66). People are increasingly required to take an active role in their care: to use medication properly, interpret and report symptoms correctly, make decisions on when to seek care, adjust to the new reality of living with HIV (and what this means for them socially and economically), cope with the emotional consequences of their disease, participate in treatment decisions and manage their care to prevent onward transmission(2). Fully engaged patients are “informed, activated patients in partnership with their physicians”, who can cope with successes, setbacks and living with uncertainty to remain engaged(2).
Retention, adherence and viral suppression measures detect issues late in the disengagement process(64), so examining active management may identify patients with a different risk of ‘tipping’ towards poor engagement and so facilitate earlier intervention to maintain treatment success and prevent poor outcomes(13, 67). Active self-management could also provide some measure of resilience to changing external factors, so that achieving ‘full engagement’ requires more than simply having (retention) and taking (adherence) a pill every day. It requires all three InCARE dimensions, making the case for the important role that active self-management plays in lifelong engagement with HIV care.
Each dimension may have differing relevance for different use cases: programme and population monitoring, research to develop a deeper understanding of how and why patients engage with their treatment to build better services and directing the clinical management of individual patients. Operationalising this understanding of engagement starts with identifying how each dimension is measured for each of these use cases. Conceptualising engagement as three measurable dimensions allows metrics to be categorised by the dimension they evaluate. This could help to disentangle the effect of interventions more granularly than only considering treatment outcomes(60), particularly if the intervention contributes to better engagement in one dimension but is not sufficient to help the patient sustain treatment success.
HIV is a relatively well-researched disease, and despite its devastating effects has had a transformational effect on the ability of health systems in sub-Saharan Africa to manage chronic disease(68). Many of the health system barriers that reduce service support of engagement for non-communicable disease patients are common to those living with HIV(69). Retention and adherence strategies in particular are an aspect of HIV care that has been successful in improving outcomes and could be leveraged to improve the care of many other less well-funded chronic diseases, such as hypertension and diabetes, in lower-resource settings(68, 69). The dimensions described in this study could be translated and adapted to explore engagement with non-communicable chronic disease, supporting research, programme evaluation as well as the development and implementation of interventions to improve engagement with care.
Strengths and limitations
This framework was developed in an iterative process between defining the dimensions of engagement and categorising measures of engagement with HIV care scoped from the literature(39). It drew on multiple inputs from literature as well as experienced clinicians and researchers to articulate the synthesis of a more comprehensive understanding of engagement. Stakeholders contributed to delineating the dimensions for greater clarity, separating factors that affect engagement (such as self-efficacy and motivation) from engagement behaviour itself, teasing out the active self-management dimension and finding terms to describe this component and the longitudinal nature of the engagement process more clearly. Pragmatism was also a major concern: how framing engagement differently relates to a change in practice was kept at the forefront of discussions.
A systematic process was used to develop this framework, but it may have benefitted from a guiding approach, such as a pragmatic utility concept clarification analysis. It has also not yet resulted in a definitive definition nor an incontrovertible framework, but is rather an incremental step towards greater clarification of the concept. The InCARE framework offers the next step in the exploration of engagement and its importance in individual and public health. Further work is required to clarify engagement’s role in the facilitation of treatment success and to build the evidence on active self-management.
While retention (measured by interaction with the health system) and adherence (measured by pharmacy refills, antiretroviral concentrations, laboratory results, healthcare worker assessment, pill counts or self-report) are commonly evaluated aspects of engagement behaviour(64), the science of self-management and related concepts is still at an early stage(70) and has not been prioritised in lower-resource settings(71). Thus, it is not routinely measured and so is not as well understood as retention or adherence. The dimension of active self-management also required the most refinement (with input from stakeholders and the results of the scoping study(39)), with concepts like motivation and self-efficacy being removed from this dimension and placed under ‘individual influential factors’ as an ability to engage rather than a reflection of engagement itself. This framework places active-management in a prominent role as one of the three core dimensions of engagement behaviour, but this position is dependent on further work to identify comparable measures of active self-management and address the paucity of evidence of its association with retention, adherence and the maintenance of treatment success.