An International, Mixed-Methods Study of the Perceived Intrusiveness of Remote Digital Diabetes Monitoring

Theodora Oikonomidi, MSc • Philippe Ravaud, MD, PhD • Arthur James, MD, MSc • Emmanuel Cosson, MD, PhD • Victor Montori, MD, PhD • Viet-Thi Tran, MD, PhD

The researchers aimed to assess the relationship between remote digital monitoring (RDM) modalities for diabetes and intrusiveness in patients’ lives. They developed an online questionnaire and interviewed 1010 patients in 30 countries. Remote digital diabetes monitoring is seen as intrusive when it includes food monitoring, real-time feedback and private-sector data handling.

COVID-19–related perceptions, context and attitudes of adults with chronic conditions: Results from a cross-sectional survey nested in the ComPaRe e-cohort

Viet-Thi Tran, MD, PhD • Philippe Ravaud, MD, PhD

Contaminations by Sars-Cov2 preferentially affect people with chronic diseases. The researchers aimed to assess what these patients were doing during the COVID-19 pandemic. They developed a questionnaire about their assessment of their own risk and how they dealt with it. They recruited 7,169 ComPaRe participants. Patients with chronic diseases have a distorted view of their risk of severe COVID-19 while they are more exposed due to their background or their attitudes.

Patients’ perspective on how to improve the care of people with chronic conditions in France: a citizen science study within the ComPaRe e-cohort

Viet-Thi Tran • Carolina Riveros • Clarisse Péan • Arnaud Czarnobroda • Philippe Ravaud

Patients have many ideas for improving their care, from the content of consultations to the organization of hospitals. This study provides the proof of concept of a method for leveraging patients' practical knowledge of the health care system in order to improve it.

Baseline Characteristics of a National French E-Cohort of Hidradenitis Suppurativa in ComPaRe and Comparison with Other Large Hidradenitis Suppurativa Cohorts

Morgane Condaminaa,• Laetitia Penso,• Viet-Thi Tran• Claire Hotze, Philippe Guillem• Axel Patrice Villanij•  Pierre Perrot•  Marie-France Bru• Eric Jacquet•  Aude Nassif•  Hervé Bachelez•  Pierre Wolkenstein• Marie Beylot-Barry• Marie-Aleth Richard• Philippe Ravaud• Manuelle Viguier• Emilie Sbidian

In this study, researchers looked at the baseline characteristics of patients with hidradenitis suppurativa included in ComPaRe. They then looked at whether these characteristics differed from patients included in "traditional" cohorts that are increasingly used in this complex condition for real-life treatment evaluation. They were able to show that in this disease, patients recruited via ComPaRe were comparable to those recruited in other cohorts, offering a new rapid tool in the palette of real-life therapeutic evaluation.

Belief and adherence to COVID 19-lockdown restrictions in patients with asthma versus other chronic diseases: results from a cross-sectional survey nested in the ComPaRe e-cohort, in France

Camille Taillé• Nicolas Roche• Florian Tesson• Coralie Tardivon• Viet-Thi Tran• Camille Couffignal

Collaborative open platform E-cohorts for research acceleration in trials and epidemiology

Viet-Thi Tran • Philippe Ravaud

The authors of this paper propose a new research model allowing to evolve from a system based on a multitude of independent projects to a cooperative model allowing i) to accelerate the research process by mutualizing the tasks common to all projects, and ii) to decrease the research waste.

Course of post COVID-19 disease symptoms over time in the ComPaRe long COVID prospective e-cohort

Viet-Thi Tran • Philippe Ravaud • Raphaël Porcher • Isabelle Pane

In this study, the researchers looked at the covid long ComPaRe cohort to see how patients' symptoms change over time. They showed that among patients who were symptomatic 2 months after their infection, 85% still had symptoms after one year. They were then able to differentiate between those symptoms whose prevalence decreased over time, those for which it remained stable, and those for which it increased.

Development and Validation of the Long Coronavirus Disease (COVID) Symptom and Impact Tools: A Set of Patient-Reported Instruments Constructed From Patients’ Lived Experience

Viet-Thi Tran • Carolina Riveros • Bérangère Clepier • Moïse Desvarieux • Camille Collet • Youri Yordanov • Philippe Ravaud

In this study, researchers developed and validated a new instrument to track the symptoms and impact of long COVID based on patients' experiences in the ComPaRe cohort. The study was conducted in two parts: 492 patients participated in the development of the tool, and 1,022 patients participated in its validation. This tool was the first to standardize the follow-up of long COVID on these points.

Evaluation of Patient Willingness to Adopt Remote Digital Monitoring for Diabetes Management

Theodora Oikonomidi, MSc • Philippe Ravaud, PhD • Emmanuel Cosson, PhD • Victor Montori, PhD • Viet Thi Tran, PhD

In this study of 1,010 adults with diabetes from 30 countries, 65% of participants said they would adopt a remote digital monitoring (RDM) system for their diabetes even if it offered no or modest improvement in their health over their current monitoring. Participants reported that they considered RDM to be most effective when they perceived it as an intrusion into their lives and when it included dietary tracking or real-time feedback from a health care professional.

Factors associated with perceived stress in patients with vitiligo in the ComPaRe e-cohort

Morgane Condamina, MD • Jason Shourick, MD • Julien Seneschal, MD, PhD • Emilie Sbidian, MD, PhD • Nicolas Andreu • Isabelle Pane • Philippe Ravaud, MD, PhD • Viet-Thi Tran, MD, PhD • Khaled Ezzedine, MD, PhD

In this study conducted in the ComPaRe vitiligo e-cohort, researchers measured factors associated with perceived stress in patients with vitiligo. They found that patients with certain personal or family characteristics are more likely to have stress-influenced vitiligo, paving the way for tailored management for these patients.

Identifying outcomes for depression that matter to patients, informal caregivers, and health-care professionals: qualitative content analysis of a large international online survey

Astrid Chevance • Philippe Ravaud • Anneka Tomlinson • Catherine Le Berre • Birgit Teufer • Suzanne Touboul • Eiko I Fried • Gerald Gartlehner • Andrea Cipriani • Viet Thi Tran

In this study, researchers highlighted domains that are important in depression for patients, caregivers, and providers. Using open-ended questions, this international study identified a list of domains that are important to each of them to promote their use in clinical trials.

Impact of an interactive web tool on patients’ intention to receive COVID-19 vaccination: a before-and-after impact study among patients with chronic conditions in France

Viet‑Thi Tran • Stéphanie Sidorkiewicz • Clarisse Péan • Philippe Ravaud

Is My Patient Overwhelmed? Determining Thresholds for Acceptable Burden of Treatment Using Data From the ComPaRe e-Cohort

Viet‑Thi Tran, MD, PhD • Victor M. Montori, MD, MSc • Philippe Ravaud, MD, PhD

In this study, researchers estimated the threshold of treatment burden beyond which patients with chronic diseases consider their current investments of time and effort in health care unsustainable. To do this, they associated the score of a treatment burden scale with the symptom acceptability status (PASS), and showed that 40% of patients with chronic disease consider the current investment of energy, time, and money in their disease as unsustainable over time.

Patients' Perspectives on Transforming Clinical Trial Participation: Large Online Vignette-based Survey

Van Thu Nguyen • Philippe Ravaud • Viet Thi Tran • Bridget Young • Isabelle Boutron

In this study, researchers conducted vignettes based on real-world clinical trial scenarios to describe patients' preferences for clinical trial organization (on-site versus remote visits) and to assess the potential impact of meeting these preferences on their willingness to participate in a trial. They determined that most participants prefer a hybrid organization that mixes on-site and remote visits, and they are more likely to participate in clinical trials that follow their preference.

Patients’ views of wearable devices and AI in healthcare: findings from the ComPaRe e-cohort

Viet-Thi Tran • Carolina Riveros • Philippe Ravaud

The purpose of this study was to describe patients' perceptions of the use of wearable biometric monitoring devices and artificial intelligence in healthcare. 1,183 patients recruited into the ComPaRe cohort answered qualitative and quantitative questions about the benefits and dangers of these new technologies, and also participated in a vignette experiment to assess their readiness to use these tools.