Social Media Listening in Congenital Ichthyosis: Quantitative and Qualitative Findings

Introduction

Congenital ichthyoses (CI), recently classified within the group of epidermal differentiation disorders, are chronic skin conditions characterized by anomalies such as scaling or skin thickening, often associated with erythroderma [1]. Quality of life is often impaired because of distressing symptoms, limited treatment efficacy, demanding skin care routines, social stigmatization, and a lack of awareness or education among both health care professionals and the general public [2,3]. Consequently, patients often turn to the internet to find answers, connect with other patients, seek support, and access information. In this study, we analyzed the role of the internet in the lives of patients with CI to better understand their experiences and needs, with the goal of improving patient care and management.

Methods

Study Design and Population

This observational, retrospective, real-world study used data collected from social media posts by patients with CI and their caregivers. The messages, written in the local languages, were geolocated in four European countries: France, Germany, the Netherlands, and Spain. This study covered the period from January 2014 through January 2024.

Data Extraction and Analysis

Data extraction and analysis methods are detailed in Multimedia Appendix 1. Briefly, data extraction was performed using the digital consumer intelligence platform Brandwatch to collect publicly available posts from public platforms and health-related forums (listed in Multimedia Appendix 2) using a list of CI-related keywords defined by the investigators (listed in Multimedia Appendix 3). Posts were cleaned by removing duplicates, irrelevant sources, nontarget languages, and messages that were too short or excessively long. A supervised machine-learning pipeline based on 2 sequential XGBoost classifiers was then applied to identify patient and caregiver experiences. Data analysis included manual extraction of demographic information when explicitly mentioned and identification of the main discussion themes using unsupervised topic modeling (biterm topic modeling), followed by human interpretation.

Ethical Considerations

This study used data exclusively from publicly accessible sources, thereby excluding private groups and web pages. Ethical approval was not required, as users implicitly consented to the reuse of their data by posting on public platforms, and all the results were presented without identifiable information. Sensitive details, including names, usernames or handles, geographic locations, and other personal data, were deleted. To ensure compliance with the General Data Protection Regulation, the names of treatments were anonymized and replaced with a generic [TREATMENT] placeholder in the messages.

Results

A total of 5175 messages were initially collected. After removing off-topic posts, 4302 messages from 2182 unique users remained. Following the application of the patient and caregiver classification algorithm, 201 messages from 169 users were identified. Of these users, 90 were patients and 79 were caregivers.

The characteristics of the users and their posts are reported in Table 1. Of the 169 users, 110 (65%) were women, with a mean age of 36 years (SD 6.1; range 21‐57). Among the 43 identified social media networks (Multimedia Appendix 2), the most frequently used platforms were Twitter (31.3%, 63/201), Doctissimo (18.4%, 25/201), and Facebook (7.5%, 15/201). The 5 main discussion topics, in decreasing order of frequency, were hygiene care (31%, 63/201), psychological impact of the disease (18%, 37/201), disease characteristics (17%, 35/201), contact tracing (13%, 27/201), and treatments or lack of awareness of the disease (10%, 20/201). Content and examples of posts for each topic are provided in Table 2.

Discussion

This first European study on social media posts from users with CI and their caregivers found that users, predominantly young women on Twitter, primarily discussed hygiene care, therapeutic issues, psychological impact, and low disease awareness among the public and health care professionals.

Regarding the study population, we observed a predominance of young female users, consistent with the general tendency for women to seek health information online [4], and with the findings of Voillot et al [5] in atopic dermatitis (AD), suggesting both general and disease-specific trends.

Hygiene care and therapeutic issues were also key discussion topics for patients with AD, along with peer support [5]. In contrast, lack of disease awareness was specific to CI, a rare condition, and, together with the psychological impact, had already been highlighted in our 2012 focus group study [2]. Topics such as romantic relationships and sexual health, reported by van Veen [3] and a shared patient voices report [6], were absent in our study, either because patients did not raise them or because they were removed as sensitive information.

Inadequate management, linked to gaps in health care professionals’ knowledge or interest and limited effective therapies, was expressed more strongly online, possibly due to the anonymity of social media. Unlike the 2012 qualitative study [2], no positive aspects of living with CI were reported, suggesting that social media mainly serves as a space to voice challenges rather than share positive experiences.

This study has several limitations, including the small number of posts due to the rarity of the disease, the exclusion of data from private groups and Instagram (Multimedia Appendix 1), and the possibility that it did not capture the needs and experiences of all patients, as those uncomfortable with the internet may not have participated.

In conclusion, this study highlights the needs of patients with CI that may guide improved management. Providing information, particularly through online tools developed in collaboration with patient associations, rare disease networks [7], or digital education programs such as our e-TPE (digital therapeutic patient education) is essential [8]. Public education also remains important and could be promoted through national society campaigns. The growing use of artificial intelligence, as recently explored in AD, is likely to transform how patients seek information [8-10]. Psychological support should be routinely offered to patients and caregivers, and research should continue to focus on developing new therapies. Collectively, these measures can help enhance patients’ quality of life.