NCT03953690

Acceptability and Persistence of the Use of a Patient-centred E-health Tool for Lupus Patients Followed in a Specialised Centre in France

• Status: Terminated
• Phase: —
• Study type: Observational
• Enrollment: 221 (actual)
• Sponsor: Centre Hospitalier Universitaire Dijon · Academic / Other
• Sex: All
• Age: 18 Years
• Healthy volunteers: Not accepted

Summary

Systemic lupus erythematosus (SLE) is a complex disease whose evaluation in daily practice and clinical research requires consideration of several aspects, in particular disease activity and quality of life. Health systems are increasingly using Patient Reported Outcome measures (PRO) data to measure different dimensions of the disease and its experience. In addition, there is a growing number of "e-health" tools for patients. Indeed, the collection of health-related data via an electronic system makes it possible to modernise and facilitate communication between patients and doctors within the framework of medical follow-up and therapeutic education. Nevertheless, very few studies measure the acceptability and effective long-term use of such tools, particularly in the context of SLE. The Sanoïa patient platform is a digital tool already used in therapeutic areas similar to SLE (discoid lupus erythematosus and rheumatoid arthritis), offering a guarantee of safety and a reduced individual cost. The availability of this health-related quality of life data collection tool via a site and a mobile application adapted to patients with SLE should: * Facilitate the collection by patients of their quality of life as part of their routine follow-up (patient access) * Limit the impact of patients' clinical profiles on the frequency of the collection of quality of life data * Enable internal medicine specialists to systematically use their patients' quality of life data during consultation (physician access). This study therefore proposes to evaluate this digital platform within the framework of SLE by measuring the distribution of access by physicians according to the data reported by patients and according to the characteristics of the facilities where the subjects were recruited for the study. These data will allow us to evaluate the influence of factors extrinsic to patients on the adoption of the tool. This area has been very poorly evaluated in the few studies that have focused on the adoption of such tools.

Conditions

• Lupus

Interventions

Type	Name	Description
OTHER	use of e-Health service	use of the e-Health e-Lupus account (at least) once a month and encouraged to advise his doctor to consult the entered data before the following consultation

Timeline

• Start date: 2020-03-19
• Primary completion: 2022-12-05
• Completion: 2022-12-05
• First posted: 2019-05-16
• Last updated: 2023-10-02

Locations

1 site across 1 country: France