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13-10-2017 | Uitgave 2/2018

Quality of Life Research 2/2018

Developing a patient-reported outcome measure for HIV care on perceived barriers to antiretroviral adherence: assessing the needs of HIV clinicians through qualitative analysis

Quality of Life Research > Uitgave 2/2018
Isabelle Toupin, Kim Engler, David Lessard, Leo Wong, Andràs Lènàrt, Bruno Spire, François Raffi, Bertrand Lebouché



To identify HIV clinicians’ needs for the clinical use of a new patient-reported outcome measure (PRO) on barriers to antiretroviral therapy (ART) adherence.


In 2015, five focus groups with 31 clinicians from France were transcribed, coded with Atlas.ti, and submitted to a typological analysis.


The analysis identified seven patient profiles, each tied to distinct barriers to adherence and to specific needs for the PRO’s content, data collection and transmission. Clinicians preferred, for the patient who is: (1) ‘passive,’ that the PRO collect information on ART knowledge, to ensure that the prescription’s instructions are being respected; (2) ‘misleading,’ that it be able to detect adherence to ART and socially desirable responses; (3) ‘stoic,’ that questions challenge the patient to recognize treatment-specific side effects; (4) ‘hedonistic,’ that the PRO contains content on lifestyle and risk-taking; (5) ‘obsessive,’ that the PRO captures quality of life and stressful life events; (6) ‘overburdened,’ that the PRO provides information on the person’s home environment, socioeconomic status and cultural constraints. For all or most patient profiles, the clinicians wished that the PRO be completed, minimally, prior to the medical consultation and to receive alerts, under varying conditions, when problematic scores were detected. Depending on the profile, there was preference for the inclusion of open-ended questions and transmission of cross-sectional, periodic or longitudinal PRO data.


Overall, this study’s findings suggest that to support the clinical management of ART adherence, our PRO must meet the needs of a wide variety of patients and must perform multiple functions.

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