The impact of alopecia areata on patients' daily lives: A study using social media in France

JEADV clinical practice Pub Date : 2024-09-27 DOI:10.1002/jvc2.539

S. Barbarot, Z. Reguiai, P. Voillot, J. Malaab, S. Schück, A. Tamzali

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Abstract

Background

Alopecia areata (AA) significantly affects patients' quality of life, leading them to seek community and support on social media platforms.

Objectives

This study aims to explore the disease's impact on patients' lives by analyzing their discussions on these platforms.

Methods

Through a retrospective analysis of French social media posts from January 2011 to October 2022, the study employed algorithm-based methods and machine learning to identify how AA affects patients' quality of life across physical, psychological, social, and financial dimensions. Additionally, qualitative methods (i.e., saturation) were used to detail the main difficulties faced by patients.

Results

The analysis covered 5075 posts by 4061 patients, primarily from Twitter/X (59.5% of messages) and YouTube (12.9%). It revealed that 81.8% of patients experienced physical impacts, closely linked to psychological issues (66.1%), with many reporting a detrimental cycle of stress and hair loss leading to anxiety and mental fatigue. This cycle adversely affected their self-image and confidence, resulting in social and professional isolation for 52.0% of patients. Financial strain was also significant, with 35.9% discussing the high costs of treatments and aesthetic maintenance. The primary difficulties included managing stress related to AA (32.1% of messages), handling the disease's duration and relapses (14.1%), and coping with damaged self-image and self-esteem issues, such as femininity and societal judgments (11.1%).

Conclusions

This study highlights the profound and multifaceted impact of AA on patients, who often turn to social media for support. The findings underscore the importance of a holistic approach to managing AA, considering its extensive physical, psychological, social, and financial effects. Integrating insights from social media with traditional healthcare and epidemiological research could offer new directions for improving patient support and treatment strategies.

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