Patients' testimonies, feelings, complaints and emotional experiences with dermatoses on open social media: The French infodemiologic patient's free speech study

Abstract

AbstractBackgroundDermatoses represent a significant burden. Patients and their caregivers can turn to social media and digital communities to exchange with each other. These public exchanges constitute real‐life data that can be analysed to better understand the patients' feelings and expectations, and the daily difficulties encountered.ObjectiveAn infodemiologic study of public testimonies of patients and caregivers related to five dermatoses: eczema, rosacea, vitiligo, acne and psoriasis, over a 3‐year time frame (September 2018 to September 2021) in France. To identify main topics of discussion, encountered difficulties and unmet medical needs.MethodsData extraction was performed based on a list of pertinent keywords. Web‐users' profiles were determined by a specifically trained machine learning algorithm. Encountered difficulties were identified by manual annotation based on a standardized search grid. Co‐occurrence analysis of difficulties allowed contextualization of challenges and unmet needs for each dermatosis.ResultsA total of 20,282 messages coming from 16,800 web users was extracted. The main topics of discussion were ‘Impact on self‐ image and self‐confidence’ (23.6%), ‘Generic discussion about therapeutics’ (23.3%) and ‘Burden of others' gaze’ (12.8%). The top three mentioned difficulties for the five targeted dermatoses were similar and focused on ‘Fear of/and management of symptoms’, ‘Impact on/and mood management’ and ‘Damaged self‐image’.ConclusionThis infodemiologic study highlighted the real‐life management of five skin diseases by patients and their caregivers, who turned to social networks to openly express their suffering and seek solutions. The joined analysis of the five diseases enabled a common comprehension of what it is to live with a skin disease, from a patient‐centric point of view. The specific analysis of each patient group objectified specific challenges, and main unmet medical needs.