Integrating Electronic Patient-Reported Outcome Measures into Routine HIV Care and the ANRS CO3 Aquitaine Cohort’s Data Capture and Visualization System (QuAliV): Protocol for a Formative Research Study

Abstract

BackgroundEffective antiretroviral therapy has greatly reduced HIV-related morbidity and mortality, dramatically changing the demographics of the population of people living with HIV. The majority of people living with HIV in France are well cared for insofar as their HIV infection is concerned but remain at risk for age-associated comorbidities. Their long-term, potentially complex, and growing care needs make the routine, longitudinal assessment of health-related quality of life and other patient-reported outcomes of relevance in the current treatment era.ObjectiveWe aim to describe the development of a Web-based electronic patient-reported outcomes system for people living with HIV linked to the ANRS CO3 Aquitaine cohort’s data capture and visualization system (ARPEGE) and designed to facilitate the electronic collection of patient-reported data and ultimately promote better patient-physician communication and quality of care (both patient satisfaction and health outcomes).MethodsParticipants who meet the eligibility criteria will be invited to engage with the Web-based electronic patient-reported outcomes system and provided with the information necessary to create a personal patient account. They will then be able to access the electronic patient-reported outcomes system and complete a set of standardized validated questionnaires covering health-related quality of life (World Health Organization's Quality of Life Instrument in HIV infection, named WHOQOL-HIV BREF) and other patient-reported outcomes. The information provided via questionnaires will ultimately be presented in a summary format for clinicians, together with the patient’s HIV care history.ResultsThe prototype of the Web-based electronic patient-reported outcome system will be finalized and the first 2 formative research phases of the study (prototyping and usability testing) will be conducted from December 2017 to May 2018. We describe the sequential processes planned to ensure that the proposed electronic patient-reported outcome system is ready for formal pilot testing, referred to herein as phases 1a and 1b. We also describe the planned pilot-testing designed to evaluate the acceptability and use of the system from the patient’s perspective (phase 2).ConclusionsAs the underlying information technology solution, ARPEGE, has being developed in-house, should the feasibility study presented here yield promising results, the panel of services provided via the proposed portal could ultimately be expanded and used to experiment with health-promoting interventions in aging people living with HIV in hospital-based care or adapted for use in other patient populations.Trial RegistrationClinicalTrials.gov NCT03296202; https://clinicaltrials.gov/ct2/show/NCT03296202 (Archived by WebCite at http://www.webcitation.org/6zgOBArps)Registered Report IdentifierRR1-10.2196/9439

Assessing the Content Validity of a New Patient-Reported Measure of Barriers to Antiretroviral Therapy Adherence for Electronic Administration in Routine HIV Care: Proposal for a Web-Based Delphi Study

“…Routine e-PROM collection in HIV health service provision is in its infancy, despite notable initiatives [8,45,46]. The clinical use of PROMs could have cascading effects on the delivery and outcomes of care, including potentially improving patient-provider communication, self-management, and adherence [47].…”

Assessing the Content Validity of a New Patient-Reported Measure of Barriers to Antiretroviral Therapy Adherence for Electronic Administration in Routine HIV Care: Proposal for a Web-Based Delphi Study (Preprint)

“…Country and language group differences in ratings will also provide indications of the crosscultural validity of the measure items. Essentially, this Delphi will engage Routine e-PROM collection in HIV health service provision is in its infancy, despite notable initiatives [8,45,46]. The clinical use of PROMs could have cascading effects on the delivery and outcomes of care, including potentially improving patient-provider communication, self-management, and adherence [47].…”

Tobacco, alcohol, cannabis, and illicit drug use and their association with CD4/CD8 cell count ratio in people with controlled HIV: a cross-sectional study (ANRS CO3 AQUIVIH-NA-QuAliV)

“…Participants’ laboratory reports are transferred from the hospitals’ laboratory information systems. The QuAliV study is a cross-sectional study, conducted within the ANRS CO3 AQUIVIH-NA cohort, assessing the multi-dimensional quality of life and other patient-reported outcomes (PROs) in PLWH via a self-administered assessment [ 22 , 23 ]. Cohort participants were recruited to the QuAliV study during their routine HIV consultation and were are invited to complete the self-assessment independently via patient-facing module of the cohort’s information system designed for the collection of electronic PROs.…”