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Background The use of patient-reported outcome (PRO) measures in care and research is proposed to foster patient-centered care but this outcome may depend on stakeholder engagement in their development and implementation. Hence, we subsequently engaged HIV patients and clinicians into a study aimed at creating a new electronic PRO (e-PRO) for monitoring barriers to antiretroviral therapy adherence in HIV care. As detailed examples of such engagement are lacking, we describe our rationale, methods and first results of these engagement initiatives. Methods We established a 10-member patient committee. Periodic focus groups engaged HIV clinicians. Focus groups were conducted with both groups to assess needs for the e-PRO: 3 mainly with patient committee members ( n =12) and 5 with clinicians ( n =31). Content on the e-PRO׳s targeted concept (adherence barriers) was analysed with Grounded Theory (patients) and with typological analysis (clinicians). Results Patients' discussions reflected three temporal categories (imprinting, domino effects, future-shadowing) and one overarching theme (weathering) in the experience of adherence and its many barriers. Latent within HIV clinicians' discussions was a typology of patients organized by distinct barriers to adherence, life conditions, and attitudes to care. Discussion Results emphasize the lived experience of managing barriers and its complexity. They suggest the new e-PRO should accommodate patient diversity, contextualize scores longitudinally, and address the personal significance of individual barriers (e.g., distressfulness) beyond their mere presence. These initial results and the opportunities presented by our long-term engagement initiatives should ensure the production of a useful and used patient-centered e-PRO.

Given recent emphasis on patient engagement in the choice and development of health measures to ensure their relevance, we examined the involvement of people living with HIV (PLHIV) in the creation of health measurement instruments that are HIV-specific or inclusive. A mixed studies review was conducted describing: 1) the sampling, recruitment and characteristics of involved PLHIV; 2) the methods and extent of their involvement; and 3) study author characterizations of this involvement. Five databases were searched in November 2015. Content and thematic analyses and a patient engagement framework guided the synthesis. Forty-one studies describing the development of thirty-nine instruments were reviewed. For many instruments, there was no reporting of the sampling method used for PLHIV involvement (87%), the recruitment setting (62%), the number of PLHIV involved (44%) or their characteristics (38%). Focus groups (38%) and interviews (36%) were the most common involvement methods. Involvement typically occurred at the patient engagement level of consultation (79%). Authors primarily characterized involvement as "contributing to instrument development" and, less frequently, as "a collaboration," "integral to instrument development" or "challenging." Patient engagement frameworks and standards for the content validation of patient-reported measures offer resources for systematic reporting, contextualizing involvement, diversifying approaches, and documenting their potentialities.

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.

Antiretroviral treatment adherence barriers are major concerns in HIV care. They are multiple and change over time. Considering temporality in patients’ perceptions of adherence barriers could improve adherence management. We explored how temporality manifests itself in patients’ perceptions of adherence barriers. We conducted 2 semi-structured focus groups on adherence barriers with 12 adults with HIV which were analyzed with grounded theory. A third focus group served to validate the results obtained. Three temporal categories were manifest in HIV-positive patients’ perceptions of barriers: (1) imprinting (events with lasting impacts on patients), (2) domino effects (chain of life events), and (3) future shadowing (apprehension about long-term adherence). An overarching theme, weathering (gradual erosion of abilities to adhere), traversed these categories. These temporalities explain how similar barriers may be perceived differently by patients. They could be useful to providers for adapting their interventions and improving understanding of patients’ subjective experience of adherence.

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.

The effectiveness of antiretroviral therapy (ART) depends on optimal clinical management and patient adherence. Little is known about patient characteristics that clinicians consider in the management of ART adherence. Exploring this issue, five focus groups were conducted with 31 HIV-clinicians from across France. A qualitative typological analysis suggests that clinician management of patient adherence is based on characteristics that coalesce into seven patient profiles. For the "passive" patient, described as taking ART exactly as prescribed without questioning their doctor's expertise, a directive and simple management style was preferred. The "misleading" patient is characterized as concerned with social desirability and as reporting no adherence difficulties for fear of displeasing their doctor. If clinical outcomes are suboptimal, the clinicians' strategy is to remind them of the importance of open patient-clinician communication. The "stoic" patient is described as requesting and adequately taking the most potent ART available. Here, clinicians emphasize assessment of side effects, which the patient may minimize. The "hedonistic" patient's festive lifestyle and sexual risk-taking are seen as compromising adherence; with them, clinicians stress the patient's responsibility for their own health and that of their sexual partners. The "obsessive" patient is portrayed as having an irrational fear of ART failure and an inability to distinguish illusory from genuine adherence barriers. With this patient, clinicians seek to identify the latter. The "overburdened" patient is recognized as coping with life priorities that interfere with adherence and, with them, a forgiving ART is favored. The "underprivileged" patient is presented as having limited education, income and housing. In this case, clinicians seek to improve the patient's living conditions and access to care. These results shed light on HIV clinicians' ART adherence management. The value of these profiles for HIV care and patients should be investigated.