Accepted for/Published in: JMIR Formative Research
Date Submitted: Jun 27, 2025
Date Accepted: Jan 27, 2026
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Social Media Listening on Congenital ichthyosis: Quantitative and Qualitative Findings
ABSTRACT
Background:
Congenital ichthyosis is associated with a significantly impaired quality of life, further exacerbated by a general lack of awareness about the disease and its daily impact. As a result, patients often seek information and solutions, as well as opportunities to connect with others who understand their condition.
Objective:
The aim of the present study was to analyze social media posts shared by patients with ichthyosis or their caregivers.
Methods:
We conducted a retrospective study across four European countries (France, Germany, Spain, and the Netherlands) from January 2014 to January 2024. Posts were collected using a list of keywords defined by participating experts. Data extraction was performed via Application Programming Interfaces, focusing on public platforms and health-related forums. Instagram was excluded due to methodological limitations in extracting and analyzing its data.
Results:
A total of 5,175 messages were initially collected. After filtering for off-topic content and applying a message classification algorithm to identify patient or caregiver contributions, 201 relevant messages from 169 users were retained. Most users were women (65%), with the majority (62%) aged between 30 and 39 years. The primary platforms used were Twitter, followed by Doctissimo and Facebook. The main topics of discussion included: hygiene care (31%), psychological impact (18%), clinical symptoms (17%), contact tracing (13%), and treatments (10%).
Conclusions:
The analysis of social media posts highlights the importance of these platforms as a channel of communication for individuals with ichthyosis. It reveals key concerns, unmet needs, and a desire for emotional support and accurate information. The topics discussed online may differ from those typically addressed with healthcare professionals. The present study emphasizes the value of integrating insights from social media into clinical practice to better respond to patient needs. Clinical Trial: NA
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