Open AccessSocial Media Platforms Listening Study on Atopic Dermatitis: Quantitative and Qualitative Findings
Author(s) -
Paméla Voillot,
Brigitte Riche,
Michel Portafax,
Pierre Foulquié,
Anaïs Gedik,
S. Barbarot,
Laurent Miséry,
Stéphane Héas,
Adel Mebarki,
Nathalie Texier,
Stéphane Schück
Publication year - 2022
Publication title -
jmir. journal of medical internet research/journal of medical internet research
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.446
H-Index - 142
eISSN - 1439-4456
pISSN - 1438-8871
DOI - 10.2196/31140
Subject(s) - social media , active listening , atopic dermatitis , quality of life (healthcare) , medicine , the internet , perception , everyday life , psychology , world wide web , computer science , nursing , communication , dermatology , neuroscience , political science , law
Background Atopic dermatitis (AD) is a chronic, pruritic, inflammatory disease that occurs most frequently in children but also affects many adults. Social media have become key tools for finding and disseminating medical information. Objective The aims of this study were to identify the main themes of discussion, the difficulties encountered by patients with respect to AD, the impact of the pathology on quality of life (QoL; physical, psychological, social, or financial), and to study the perception of patients regarding their treatment. Methods A retrospective study was carried out by collecting social media posts in French language written by internet users mentioning their experience with AD, their QoL, and their treatments. Messages related to AD discomfort posted between July 1, 2010, and October 23, 2020, were extracted from French-speaking publicly available online forums. Automatic and manual extractions were implemented to create a general corpus and 2 subcorpuses depending on the level of control of the disease. Results A total of 33,115 messages associated with AD were included in the analysis corpus after extraction and cleaning. These messages were posted by 15,857 separate web users, most of them being women younger than 40 years. Tips to manage AD and everyday hygiene/treatments were among the most discussed topics for controlled AD subcorpus, while baby-related topics and therapeutic failure were among the most discussed topics for insufficiently controlled AD subcorpus. QoL was discussed in both subcorpuses with a higher proportion in the controlled AD subcorpus. Treatments and their perception were also discussed by web users. Conclusions More than just emotional or peer support, patients with AD turn to online forums to discuss their health. Our findings show the need for an intersection between social media and health care and the importance of developing new approaches such as the Atopic Dermatitis Control Tool, which is a patient-related disease severity assessment tool focused on patients with AD.