Social Media Listening in Congenital Ichthyosis: Quantitative and Qualitative Findings

JMIR Formative Research 2026 Open access

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Authors: Maella Severino‐Freire, Céline Granier Tournier, Joelle Malaab, Kira Süßmuth, Antoni Gostyński, Angela Hernández‐Martín, J. Mazereeuw‐Hautier
DOI: 10.2196/79761
Cited by: 0
References: 13

Abstract

Unlabelled: This study analyzed social media posts from patients with congenital ichthyosis and their caregivers across Europe and found that users, primarily young women, discussed hygiene care, psychological impact, therapeutic challenges, and lack of disease awareness. This allowed for the identification of unmet needs and potential actions to improve patients' quality of life.

Fields of Study & Subjects

Social Media in Health Education Health Literacy and Information Accessibility Dermatology and Skin Diseases

Publication details

Journal / source
JMIR Formative Research
Volume
10
Pages
e79761–e79761
Publication date
27 January 2026
Language
EN