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

  • End date
    Mar 1, 2024
  • participants needed
  • sponsor
    Centre Hospitalier Universitaire Dijon
Updated on 1 May 2021
systemic lupus erythematosus
discoid lupus erythematosus
facilitate communication


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 Sanoa 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 Lupus Vulgaris, Discoid lupus erythematosus, SYSTEMIC LUPUS ERYTHEMATOSUS, Discoid Lupus Erythematosus (DLE), Lupus
Treatment use of e-Health service
Clinical Study IdentifierNCT03953690
SponsorCentre Hospitalier Universitaire Dijon
Last Modified on1 May 2021


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Inclusion Criteria

Adult > 18 years old
Having given oral consent for participation
Confirmed systemic lupus diagnosis (ACR criteria)
Regular follow-up in the centre for more than 12 months
With Internet access at home
Affiliated with national health insurance system or other system

Exclusion Criteria

Persons subject to a legal protection measure (curatorship, guardianship)
Persons subject to limited judicial protection
Adults who are incapable or unable to express their consent
Patients who cannot read French
Patients whose cognitive status does not allow them to track their health data on a digital platform
Patients to be followed up in another centre within 12 months
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