Acceptability and Persistence of the Use of a Patient-centred E-health Tool for Lupus Patients Followed in a Specialised Centre in France (e-LUPUS)
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|ClinicalTrials.gov Identifier: NCT03953690|
Recruitment Status : Not yet recruiting
First Posted : May 16, 2019
Last Update Posted : May 16, 2019
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.
|Condition or disease||Intervention/treatment|
|Lupus||Other: use of e-Health service|
|Study Type :||Observational|
|Estimated Enrollment :||530 participants|
|Official Title:||Acceptability and Persistence of the Use of a Patient-centred E-health Tool for Lupus Patients Followed in a Specialised Centre in France|
|Estimated Study Start Date :||July 2019|
|Estimated Primary Completion Date :||July 2021|
|Estimated Study Completion Date :||October 2021|
- 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
- utilization rate of online patient account [ Time Frame: Through study completion, an average of 24 months ]rate of use of the patient account at least twice, at least 1 month apart, over a 12-month period
To learn more about this study, you or your doctor may contact the study research staff using the contact information provided by the sponsor.
Please refer to this study by its ClinicalTrials.gov identifier (NCT number): NCT03953690
|Contact: Hervé DEVILLIERS||+33 3 80 39 33 firstname.lastname@example.org|
|Centre Hospitalier Universitaire||Not yet recruiting|
|Dijon, France, 21079|
|Contact: Hervé DEVILLIERS 03 80 39 33 79 ext 33 email@example.com|