Social Media Listening in Congenital Ichthyosis: Quantitative and Qualitative Findings

TL;DR

The study explores how people with congenital ichthyosis use social media to discuss their experiences and highlights areas needing improvement.

Contribution

The novel contribution is identifying unmet needs through social media analysis in congenital ichthyosis patients and caregivers.

Findings

Users predominantly discussed hygiene care and psychological impact.

Therapeutic challenges and lack of disease awareness were frequently mentioned.

Young women were the primary contributors to the discussions.

Abstract

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.