Barriers to antiretroviral therapy adherence in developed countries: a qualitative synthesis to develop a conceptual framework for a new patient-reported outcome measure

Abstract

Suboptimal adherence to antiretroviral therapy (ART) remains common. Patient-centered tools are needed to comprehensively assess adherence barriers in HIV clinical practice. Thus, we conducted a research synthesis to produce a conceptual framework for a new patient-reported outcome measure (PRO) for use in routine HIV care in Canada and France. A PRO's conceptual framework graphically represents the concepts to be measured and the potential relationships between them. Towards ensuring the framework's relevance to the target populations' concerns, qualitative studies with HIV-positive adults on barriers to ART adherence in developed countries were synthesized with thematic analysis, attending to the cross-study prevalence and interrelationships of barrier themes. In March 2016, searches within Medline, PsychINFO, and Embase produced 5,284 records. Two reviewers determined the final sample (n = 41). Analysis generated three levels of ART adherence barrier themes. Twenty Level 2 themes and their component subthemes (Level 3) were organized into 6 higher-order themes (Level 1): Cognitive and emotional aspects (100% of studies contributing content -prevalence), Lifestyle factors (95%), Social and material context (95%), Characteristics of ART (90%), Health experience and state (73%), and Healthcare services and system (66%). As to interrelationships, study authors articulated relationships between all higher-order themes (Level 3). Linkages between Level 2 barrier themes showed great variability, from 21% to 95%. Overall, this synthesis contributes an exceptionally detailed conceptual framework and report of ART adherence barriers, applicable to a wide range of PLHIV. It suggests that a key to understanding many barriers is through their interconnections. It also identifies gaps in barrier research. Concerning the new PRO's development, comprehensiveness will need to be weighed against other concerns (e.g., respondent burden) and the provision of barrier-specific guidance for clinically addressing its scores seems essential.

Reporting and synthesis practices in barriers and facilitators reviews: a methodological systematic review

“…[57] "Some facilitators and inhibitors were not exclusive to one theme example, continuity of older people's values, beliefs and persona identity, and factors related to organisational culture." [58] Interrelationship among identified factors [26,49,51,52,54] "Our findings also suggest that many, if not, most barriers must b understood through their interrelationships versus conceiving the as singular, independent entities. […] The notion of barriers as constellations -as composed of interconnected, evolving, and contextualized impediments to adherence -could be helpful for further reflection.…”

“…Most studies self-identified as systematic reviews (81%), although certain studies used their synthesis method to define their review type (e.g. [25][26][27][28][29]). Further, one study self-identified as a rapid realist review [30], and others as meta-ethnographies [31,32].…”

Evaluation of a project to engage patients in the development of a patient‐reported measure forHIVcare (the I‐Score Study)

“…Results for five studies which received Team feedback have been published: the needs assessment conducted during Meetings 1 and 2, a review of HIV‐specific PROMs, a qualitative synthesis to produce the PROM's conceptual framework and studies on clinicians’ perceptions of patients’ needs regarding the I‐Score PROM (Subproject 1) . Qualitative research with the Team defined and confirmed PLHIV's needs for the I‐Score PROM and the Study subprojects and contextualized I‐Score results within PLHIV's lived experience.…”

“…Its rationale and exploratory multi‐method (qualitative and quantitative) four‐step design are explained elsewhere . So far, I‐Score investigators have completed its first step, that is, the generation of the PROM's conceptual framework and its items, informed by qualitative interviews with PLHIV, a review of HIV‐specific PROMs and a synthesis of qualitative research with PLHIV on ART adherence barriers …”

Aderenza alla terapia antiretrovirale negli adolescenti con infezione da HIV: una questione aperta per il team multidisciplinare

“…Da questa messe di dati si è presa consapevolezza, negli anni successivi, da una parte, della impossibilità e anche della non necessità di offrire a tutti indistintamente un servizio personalizzato di supporto alla aderenza e, dall'altra, come logica conseguenza della prima, dell'importanza di concentrare gli sforzi assistenziali sulle cosiddette "popolazioni" fragili; su quelle popolazioni, cioè, a rischio elevato di non aderenza/ subaderenza. Sforzi assistenziali che dovrebbero essere principalmente concentrati sui fattori di aderenza legati alle caratteristiche personologiche e sociali del paziente ed al rapporto pazientestruttura di cura, per cercare di aumentare i livelli di standard di cure ed assistenza (12)(13)(14)(15).…”