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

Abstract

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 programmelevel 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.

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

“…We examined the concept of engagement with HIV care from the perspective of the health service's evaluation of engagement, to guide clinical management and implementation of interventions to improve outcomes. While Morse's Pragmatic Utility approach was not explicitly used, in line with the approach's focus on the usefulness of a concept in practice(38) this framework was initially developed with a speci c purpose: to inform the search and analysis stages of a systematic scoping study of measures of engagement with HIV care, by identifying critical, measurable dimensions of engagement from a health service-delivery perspective to guide evaluation (39). However, it was found by stakeholders to be useful more broadly in making sense of the complex concept of engagement with HIV care and to articulate an understanding that could potentially be useful in practice.…”

“…This framework was developed in an iterative process between de ning 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.…”

“…Thus, it is not routinely measured and so is not as well understood as retention or adherence. The dimension of active selfmanagement also required the most re nement (with input from stakeholders and the results of the scoping study (39)), with concepts like motivation and self-e cacy being removed from this dimension and placed under 'individual in uential factors' as an ability to engage rather than a re ection 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 selfmanagement and address the paucity of evidence of its association with retention, adherence and the maintenance of treatment success.…”

Comparing a point‐of‐care urine tenofovir lateral flow assay to self‐reported adherence and their associations with viral load suppression among adults on antiretroviral therapy

“…Three binary self-reported adherence indicators were calculated to capture short-term medication taking: (1) ≥1 missed dose in the past 3 days, (2) ≥1 missed dose in the past 7 days, and (3) ≥2 missed doses in the past 7 days. Shortterm missed dose recall is a common self-reported adherence metric [9,10]. We included ≥1 missed dose in the past 3 days to try to capture the period covered by the POC TFV LFA, and ≥1 and ≥2 mossed doses in the past 7 days as alternatives.…”

Relationship Between Tenofovir Diphosphate Concentrations in Dried Blood Spots and Virological Outcomes After Initiating Tenofovir–Lamivudine–Dolutegravir as First-Line or Second-Line Antiretroviral Therapy

“…2 Measuring adherence is challenging and, given the poor performance of subjective adherence measures, objective measures of adherence are becoming an increasingly important field in HIV research. [3][4][5][6] Tenofovir diphosphate (TFV-DP), the phosphorylated anabolite of tenofovir, exhibits a prolonged half-life of approximately 17 days in dried blood spots (DBS) when derived from the prodrug TDF. 7 TFV-DP concentration in DBS is therefore a marker of cumulative ART exposure in people on TDFcontaining fixed-dose combination ART.…”