Characteristics and information searched for by French patients with ă systemic lupus erythematosus: A web-community data-driven online survey

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Introduction: To provide information about the needs of patients with ă systemic lupus erythematosus (SLE) using Carenity, the first European ă online platform for patients with chronic diseases. Methods: At one year ă after its creation, all posts from the Carenity SLE community were ă collected and analysed. A focused cross-sectional online survey was ă performed. Results: The SLE community included 521 people (93% females; ă mean age: 39.8 years). Among a total of 6702 posts, 2232 were classified ă according to disease-related topics. The 10 most common topics were ă `lupus and...' either `treatment', `fatigue', `entourage', `sun ă exposure', `diagnosis', `autoimmune diseases', `pregnancy', ă `contraception', `symptoms' or `sexuality'. 112 SLE patients ă participated in the online survey. At the time of diagnosis, only 17 ă (15%) patients had heard of SLE and 84 (75%) expressed a need for more ă information on outcomes (27%), treatments (27%), daily life (14%), ă patients' associations (11%), symptoms (8%), the disease (8%) and ă psychosocial aspects (7%). When treatment was initiated, 48 patients ă (43%) would have liked more information about side effects (46%), ă long-term effects (21%), treatment duration/cessation (12.5%) and type ă (10%) and mechanism of action (8%) of treatments. All participants ă except one had used the internet to find information about SLE. Sources ă of information included healthcare providers (51%/61%/67%), ă journals/magazines (7%/12%/6%), lupus Websites (51%/77%/40%), web ă forums/blogs (34%/53%/19%), patients' associations (11%/23%/9%) ă accessed at `just before diagnosis', `just after diagnosis' and `before ă treatment initiation'. Conclusions: Online patient communities provide ă original unbiased information that can help improve provision of ă information to SLE patients.