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

Bernard Meunier, Noemie Jourde-Chiche (), J. Mancini (), M. Chekroun, F. Retornaz and L. Chiche
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Bernard Meunier: Service de Chirurgie Hépatobiliaire et Digestive [Rennes] = Hepatobiliary and Digestive Surgery [Rennes] - Centre Hospitalier Universitaire de Rennes [CHU Rennes] = Rennes University Hospital [Pontchaillou], Centre Hospitalier Universitaire de Rennes [CHU Rennes] = Rennes University Hospital [Pontchaillou]
J. Mancini: LERTIM - Laboratoire d'Enseignement et de Recherche sur le Traitement de l'Information Médicale - Université de la Méditerranée - Aix-Marseille 2, ORL et Chirurgie cervico-faciale pédiatrique - [Hôpitaux Timone et Nord - APHM] - AMU - Aix Marseille Université - APHM - Assistance Publique - Hôpitaux de Marseille - TIMONE - Hôpital de la Timone [CHU - APHM] - Hôpital Nord [CHU - APHM]
F. Retornaz: Hôpital Européen [Fondation Ambroise Paré - Marseille]
L. Chiche: Hôpital Européen [Fondation Ambroise Paré - Marseille]

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Abstract: 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.

Keywords: Quality (search for similar items in EconPapers)
Date: 2016-04
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Published in Lupus, 2016, 25 (4), pp.370-375. ⟨10.1177/0961203315610644⟩

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Persistent link: https://EconPapers.repec.org/RePEc:hal:journl:hal-01482503

DOI: 10.1177/0961203315610644

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