Quality of Life Research

, Volume 27, Issue 2, pp 379–388 | Cite as

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

  • 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.


Antiretroviral therapy adherence Patient-reported outcome measure, HIV clinicians’ needs HIV patient profiles Qualitative analysis HIV care 



We would like to thank the participants of this study for their valuable input. We also thank Chantal Burelle for her administrative support and Roy Nitulescu for his feedback on the manuscript’s results.


IT, DL and AL are the recipients of a Mitacs Accelerate Postdoctoral Internship award (#05857). BL is supported by a Research Scholar award of the FRQS (Quebec Health Research Funds) and holds a Strategy for Patient-Oriented Research (SPOR) Mentorship Chair in Innovative Clinical Trials awarded by the Canadian Institutes of Health Research (; CIHR: #383427). This study was conducted as a part of a larger study (The I-Score Study, identifier: NCT02586584) which is supported in part by both the CIHR’s HIV Clinical Trials Network (CTN 283) and by a research Grant from the Investigator Initiated Studies Program of Merck Canada Inc. (IISP-53538).

Compliance with ethical standards

Conflict of interest

The authors have no conflicts of interest to declare.


The opinions expressed in this manuscript are those of the authors and do not necessarily represent those of Merck Canada Inc. or its affiliates or related companies.

Ethical approval

Ethical approval was granted by the Biomedical Research Ethics Board of the McGill University Health Centre (Study Code 14-229-PSY).

Informed consent

Informed consent was obtained from all individual participants included in the study.


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Copyright information

© Springer International Publishing AG 2017

Authors and Affiliations

  • Isabelle Toupin
    • 1
    • 2
    • 3
    • 4
  • Kim Engler
    • 1
    • 2
    • 3
    • 4
  • David Lessard
    • 1
    • 2
    • 3
    • 4
  • Leo Wong
    • 2
    • 3
  • Andràs Lènàrt
    • 1
  • Bruno Spire
    • 5
  • François Raffi
    • 6
  • Bertrand Lebouché
    • 1
    • 2
    • 3
    • 4
  1. 1.Department of Family MedicineMcGill UniversityMontrealCanada
  2. 2.Centre for Outcomes Research & EvaluationResearch Institute of the McGill University Health CentreMontrealCanada
  3. 3.Royal Victoria Hospital, Chronic Viral Illness ServiceMcGill University Health CentreMontrealCanada
  4. 4.Strategy for Patient-Oriented Research (SPOR) Mentorship Chair in Innovative Clinical Trials (Canadian Institutes of Health Research)MontrealCanada
  5. 5.SESSTIMUniversité Aix-MarseilleMarseilleFrance
  6. 6.Department of Infectious Diseases, CHU de Nantes and CIC 1413INSERMNantesFrance

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