Dataset Information

Web-Based Module for the Collection of Electronic Patient-Reported Outcomes in People Living With HIV in Nouvelle Aquitaine, France: Usability Evaluation.

ABSTRACT: BACKGROUND:Patient-reported outcomes (PROs) can be of great value for both research and chronic disease management. We developed a new module of the ANRS CO3 Aquitaine cohort study's Web-based data capture and visualization solution (APPEGE 2.0) for the collection of electronic PROs among people living with HIV cared for in Nouvelle Aquitaine, France. OBJECTIVE:This study aimed to evaluate the usability of 2 successively developed prototypes of ARPEGE 2.0's electronic PROs module before launching a pilot study, owing to the novelty of the proposed data collection method for our setting and specific characteristics of the target population. METHODS:A total of 2 sequential rounds of empirical, task-based usability evaluations were conducted, involving 8 research staff and then 7 people living with HIV. Evaluators provided written feedback during round 1 and oral feedback during round 2. Evaluators who completed the full set of tasks responded to the System Usability Scale (SUS). We assessed changes in SUS scores between rounds and concluded usability testing when SUS scores reached a ceiling effect, defining good usability a priori as a usability score of 70. RESULTS:Insights were generated regarding the visibility of system status and the match between the system and the real world that improved the module's usability. Research staff evaluators reported mean SUS scores of 65 (SD 18.87) and patient evaluators reported mean SUS scores of 85 (SD 5.4; P=.032). CONCLUSIONS:Software modifications, informed by successive rounds of usability testing, resulted in sufficient gains in usability to undertake piloting. Insights generated during evaluations prompted us to find the appropriate balance between optimal security and ease of use. TRIAL REGISTRATION:ClinicalTrials.gov NCT03296202; https://clinicaltrials.gov/ct2/show/NCT03296202. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID):RR2-10.2196/10.2196/resprot.9439.

SUBMITTER: Barger D

PROVIDER: S-EPMC6939280 | biostudies-literature | 2019 Dec

REPOSITORIES: biostudies-literature

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Web-Based Module for the Collection of Electronic Patient-Reported Outcomes in People Living With HIV in Nouvelle Aquitaine, France: Usability Evaluation.

Barger Diana D Leleux Olivier O Conte Valérie V Sapparrart Vincent V Gapillout Marie M Crespel Isabelle I Erramouspe Marie M Delveaux Sandrine S Wittkop Linda L Dabis François F Bonnet Fabrice F

JMIR formative research 20191218 4

<h4>Background</h4>Patient-reported outcomes (PROs) can be of great value for both research and chronic disease management. We developed a new module of the ANRS CO3 Aquitaine cohort study's Web-based data capture and visualization solution (APPEGE 2.0) for the collection of electronic PROs among people living with HIV cared for in Nouvelle Aquitaine, France.<h4>Objective</h4>This study aimed to evaluate the usability of 2 successively developed prototypes of ARPEGE 2.0's electronic PROs module ...[more]

PMID: 31850847

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Project description:BackgroundThere is currently limited evidence on the level and intensity of physical activity in individuals with hemophilia A. Mobile technologies can offer a rigorous and reliable alternative to support data collection processes but they are often associated with poor user retention. The lack of longitudinal continuity in their use can be partly attributed to the insufficient consideration of stakeholder inputs in the development process of mobile apps. Several user-centered models have been proposed to guarantee that a thorough knowledge of the end user needs is considered in the development process of mobile apps.ObjectiveThe aim of this study is to design and validate an electronic patient-reported outcome mobile app that requires sustained active input by individuals during POWER, an observational study that aims at evaluating the relationship between physical activity levels and bleeding in patients with hemophilia A.MethodsWe adopted a user-centered design and engaged several stakeholders in the development and usability testing of this mobile app. During the concept generation and ideation phase, we organized a need-assessment focus group (FG) with patient representatives to elicit specific design requirements for the end users. We then conducted 2 exploratory FGs to seek additional inputs for the app's improvement and 2 confirmatory FGs to validate the app and test its usability in the field through the mobile health app usability questionnaire.ResultsThe findings from the thematic analysis of the need-assessment FG revealed that there was a demand for sense making, for simplification of app functionalities, for maximizing integration, and for minimizing the feeling of external control. Participants involved in the later stages of the design refinement contributed to improving the design further by upgrading the app's layout and making the experience with the app more efficient through functions such as chatbots and visual feedback on the number of hours a wearable device had been worn, to ensure that the observed data were actually registered. The end users rated the app highly during the quantitative assessment, with an average mobile health app usability questionnaire score of 5.32 (SD 0.66; range 4.44-6.23) and 6.20 (SD 0.43; range 5.72-6.88) out of 7 in the 2 iterative usability testing cycles.ConclusionsThe results of the usability test indicated a high, growing satisfaction with the electronic patient-reported outcome app. The adoption of a thorough user-centered design process using several types of FGs helped maximize the likelihood of sustained retention of the app's users and made it fit for data collection of relevant outcomes in the observational POWER study. The continuous use of the app and the actual level of engagement will be evaluated during the ongoing trial.Trial registrationClinicalTrials.gov NCT04165135; https://clinicaltrials.gov/ct2/show/NCT04165135.

Project description:BackgroundIt is estimated that 564,000 Canadians are currently living with dementia and there are approximately 486,000 to 1.1 million informal family/friend caregivers. Family/friend caregivers often receive little to no education or training about dementia but are expected to provide ongoing support for a complex condition. Web-based family/friend caregiver interventions may be helpful, but little is known about how best to implement them.ObjectiveThe objectives of this study were to 1) design and develop a novel education prescription application to help scale and spread web-based dementia education to family/friend caregivers, 2) conduct user testing, and 3) conduct a larger-scale field trial.MethodsA novel education prescription web-based application was designed and developed. Initial user testing used task completion and the "think aloud" technique with a small sample of representative clinicians who work with people living with dementia and family/friend caregivers. Following iterative incorporation of feedback, a larger field trial was conducted with a convenience sample of clinicians. Account invitations were sent to 55 clinicians and, following a 2-month trial period, surveys were administered to participants including the System Usability Scale and the Net Promoter Score.ResultsDuring the initial user testing phase, participants (N=7) from representative disciplines easily completed associated tasks, and had very positive feedback with respect to the usability of the application. The System Usability Scale score during this phase was 91.4. Suggestions from feedback were incorporated into the application. During the larger field trial phase, participants (total N=55; activated account n=17; did not activate account n=38) were given access to the iGeriCare education prescription application. During this period, 2 participants created educational prescriptions; a total of 3 educational prescriptions were sent. Survey completers who did not activate their account (n=5) identified that their lack of use was due to time constraints, competing priorities, or forgetting to use the application. Survey completers who activated their account (n=5) identified their lower use was due to lack of time, lack of eligible family/friend caregivers during trial period, and competing priorities due to the COVID-19 pandemic. The System Usability Scale score during this phase was 78.75, and the Net Promoter Score was 50.ConclusionsStudy findings indicate a generally positive response for the usability of a web-based application for clinicians to prescribe dementia education to family/friend caregivers. The dissonance between the promising data and widespread enthusiasm for the design and purpose of the education prescription application found in the initial user testing phase and subsequent lack of significant adoption in the field trial represents both an important lesson for other novel health technologies and a potential area for further investigation. Further research is required to better understand factors associated with implementation of this type of intervention and impact on dissemination of education to family/friend caregivers.

Project description:ObjectivesTo evaluate the feasibility of a digital and continuous collection and reporting of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) for chronic heart failure (CHF).DesignA single-site pilot study was settled for evaluating the feasibility of the intervention, both using qualitative and quantitative data (ie, workshop, surveys).SettingThe pilot has been implemented in a Tuscan specialised hospital (Italy).Participants162 patients were involved. Inclusion criteria were: a previous diagnosis of HF, age ≥18 years, absence of cognitive impairment or active tumours, ability to provide informed consent to study participation.InterventionThe continuous collection and reporting of PROMs and PREMs has been designed and implemented in 2018. PREMs questionnaires for patients were developed, while Kansas City Cardiomyopathy Questionnaire-12 was used for assessing PROMs. Questionnaires are administered at specific time points: discharge; 30 days, 7 and 12 months after the discharge. Enrolment of patients, administration and real-time reporting of questionnaires are carried on through a digital platform.Outcome measuresEnrolment, response and drop-out rates were considered to assess the feasibility of the intervention. Qualitative data were collected during meetings and workshops with health workers. The representativeness of the recruited sample with respect to the population characteristics was also evaluated.ResultsThe system has been successfully implemented during 2018. Response rates have been consistently above 50%, demonstrating patients' transversal willingness to participate. All the involved stakeholders acknowledged the feasibility of the design. The recruited sample is significantly different in terms of age and educational level compared with the overall population characteristics.ConclusionIt is possible to run a web-based systematic collection and reporting system for CHF patient-reported data. Systematic collection and reporting of PROMs and PREMs data allows professionals to increasingly assume CHF patient perspective in their daily work. Limitations will be used to improve the system.

Project description:BACKGROUND:Effective 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. OBJECTIVE:We 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). METHODS:Participants 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. RESULTS:The 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). CONCLUSIONS:As 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 REGISTRATION:ClinicalTrials.gov NCT03296202; https://clinicaltrials.gov/ct2/show/NCT03296202 (Archived by WebCite at http://www.webcitation.org/6zgOBArps). REGISTERED REPORT IDENTIFIER:RR1-10.2196/9439.

Project description:BackgroundConsidering the changing landscape of internet use and rising ownership of digital technology by young people, new methods could be considered to improve the current model of juvenile idiopathic arthritis (JIA) management.ObjectiveThis systematic review aims to evaluate the usability of eHealth and mobile health (mHealth) interventions currently available for young people living with JIA.MethodsThe PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) guidelines were used to oversee this review. We systematically searched 15 databases for 252 potential studies; 2 authors independently screened all quantitative studies reporting the use of eHealth and mHealth interventions for young people (aged 1-18 years) diagnosed with JIA. Studies were excluded if they did not report outcome measures or were reviews, commentaries, or qualitative studies. Study methodological quality was scored using the Down and Black (modified) checklist. A narrative descriptive methodology was used to quantify the data because of heterogeneity across the studies.ResultsA total of 11 studies were included in this review, reporting 7 eHealth and mHealth interventions for young people (aged 4-18 years) living with JIA, targeting health issues such as pain, health-related quality of life, physical activity, and chronic disease self-management. The usability of the interventions was facilitated through training and ongoing support. The engagement was promoted by a combination of persuasive influences, and barriers preventing adherence were removed through personal reminders and flexible program schedules to cater to JIA and non-JIA illnesses or other commonly seen activities in childhood. The feedback obtained was that most young people and their parents liked the interventions.ConclusionsThe results of this review need to be considered cautiously because of the lack of rigorous testing and heterogeneity, which limits the detailed descriptions of data synthesis. Further research is needed to consider gender differences, associated costs, and the effectiveness of the interventions on health outcomes to better support young people living with JIA.

Project description:PurposeMissing data are a significant problem in clinical trials, particularly for quality of life (QOL), which cannot be obtained retrospectively. The purpose of this study was to evaluate the feasibility of an electronic web-based strategy for QOL data collection in a cooperative group radiation oncology trial setting.Methods and materialsRadiation Therapy Oncology Group (RTOG) 0828 was a prospective National Cancer Institute cooperative group companion study of RTOG-0415, a randomized study of conventional versus hypofractionated radiation. Forty-nine English-speaking patients with favorable risk prostate cancer who enrolled on RTOG-0415 consented to using web-based technology for completing QOL. In RTOG-0415, using paper forms, the 6-month QOL compliance rate was 52%. The purpose of RTOG-0828 was to test the feasibility of a web-based strategy with the goal of increasing the 6-month QOL completion rate by 25% (from 52% to 77%) for a relative improvement of ~50%. The web-based tool used in this study was VisionTree Optimal Care (VTOC; VisionTree Software, Inc, San Diego, CA), a Health-Insurance-Portability-Accountability-Act secure, online technology that allows real-time tracking and e-mail reminders. The primary endpoint was the 6-month compliance rate for the validated QOL instrument, Expanded Prostate Index Composite.ResultsThe QOL completion rate at baseline was 98%. Compared with the prior 52% QOL completion rate at 6 months using paper forms, the QOL web-based completion rate at 6 months was 90% (2-sided P value < .001). At 12 months, the EPIC completion rate was 82% (compared with 36% using paper forms).ConclusionsThis RTOG study suggests that a web-based strategy to collect QOL appears to be feasible in the cooperative group radiation oncology trial setting and is associated with an increase in the 6-month QOL compliance rate compared with the prior method of using paper forms. The RTOG plans to further test this strategy in a head-and-neck cancer trial across all participating RTOG sites.

Project description:BackgroundTaking antiretroviral therapy (ART) is part of the daily life of people living with HIV. Different electronic health (eHealth) initiatives adjunctive to usual care have been proposed to support optimal medication adherence. A web-based intervention called HIV Treatment, Virtual Nursing Assistance, and Education or VIH-TAVIE (from its French version Virus de l'immunodéficience humaine-Traitement assistance virtuelle infirmière et enseignement) was developed to empower people living with HIV to manage their ART and symptoms optimally.ObjectiveWe aimed to evaluate the effectiveness of VIH-TAVIE in a web-based randomized controlled trial (RCT).MethodsThis RCT was entirely web-based, including recruitment, consent granting, questionnaire completion, and intervention exposure (consultation with VIH-TAVIE [experimental group] or websites [control group]). To be eligible for the study, people living with HIV had to be 18 years or older, be on ART for at least 6 months, have internet access, and have internet literacy. Participants were randomly assigned to either the experimental group (n=45) or control group (n=43). The primary outcome was ART adherence. The secondary outcomes included self-efficacy regarding medication intake, symptom-related discomfort, skills and strategies, and social support. All outcomes were measured with a self-administered web-based questionnaire at the following three time points: baseline and 3 and 6 months later. A generalized linear mixed model was built to assess the evolution of ART adherence over time in both groups.ResultsThe sample included 88 participants, and of these, 73 (83%) were men. The median age of the participants was 42 years. Participants had been diagnosed with HIV a median of 7 years earlier (IQR 3-17) and had been on ART for a median of 5 years (IQR 2-12). The proportion of treatment-adherent participants at baseline was high in both groups (34/41, 83% in the experimental group and 30/39, 77% in the control group). Participants also reported high treatment adherence, high self-efficacy, and high skills; perceived good social support; and experienced low discomfort from symptoms. Analyses revealed no intergroup difference regarding ART adherence (OR 1.9, 95% CI 0.6-6.4).ConclusionsThis study highlights the challenges and lessons learned from conducting an entirely web-based RCT among people living with HIV. The challenges were related to the engagement of people living with HIV on the following three levels: starting the web-based study (recruitment), completing the web-based intervention (engagement), and continuing the study (retention). The results contribute to the existing body of knowledge regarding how to conduct web-based evaluation studies of eHealth interventions aimed at developing and strengthening personal skills and abilities.Trial registrationClinicalTrials.gov NCT01510340; https://clinicaltrials.gov/ct2/show/NCT01510340.

Dataset Information

Web-Based Module for the Collection of Electronic Patient-Reported Outcomes in People Living With HIV in Nouvelle Aquitaine, France: Usability Evaluation.

Publications

Web-Based Module for the Collection of Electronic Patient-Reported Outcomes in People Living With HIV in Nouvelle Aquitaine, France: Usability Evaluation.

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