Social Media: A gateway to the heart of dermatosis patients?
Many patients share difficulties and other disease-related information on social media. This data can be useful, according to a recent study.
Dermatoses as a problem on social media
- People affected by dermatoses discuss various dermatosis-related topics on social media.
- For the most part, it is about self-esteem, therapies, and dealing with the gaze of others.
- Difficulties mentioned by users include symptoms and their management, mental health, and struggles low self-esteem.
- According to the authors, this data can help to identify gaps in dermatoses care.
How was the study conducted?
The topic of social media raises the question of how the authors conducted the study (DOI: 10.1111/jdv.19781). After all, there are millions of posts on a wide variety of social channels being posted every day. Filtering out posts on the included dermatoses - atopic dermatitis, psoriasis, acne, rosacea and vitiligo - seems impossible.
The researchers therefore used a specially developed computer programme, which initially identified more than 16,000 users who were included in the study. A specific grid (a powerful computer cluster) then took over the search for posts about difficulties that those affected were struggling with. Over 20,000 social media posts were analysed.
What concerns patients?
As is to be expected with the diseases included, patients are primarily concerned with the effects of dermatosis on their appearance and therefore, for many, on their self-image and self-esteem. The attention they attract from others because of their skin is also one of the top 3 topics.
However, in addition to appearances, there are also many contributions or posts about various treatment options. These are mostly generalised discussions in terms of medical products or home remedies.
What difficulties are associated with dermatoses?
The issues that sufferers experience as difficulties are similar to those that they deal with in general discussions. The fear of or the management of existing symptoms is the number one issue here. The altered self-image, accompanied by a lowered self-esteem, is also rated as difficult by many.
What is particularly interesting, however, and should not be ignored by treating physicians, is the third focus here: mental health and the effects of the illness and therapy on mood. This seems to be a major issue for those affected and should definitely be kept in mind in everyday clinical practice.
Social media fills the gap
Social media offers a wealth of information and real-world data. The present study shows that gaps in the diagnosis and treatment of various chronic diseases may come to light. Whether the results relating to the dermatoses analysed here are completely new and surprising is yet to be seen.
- Marty T, Khadar M, Autelitano L, Baissac C, Mebarki A, Texier N, Schück S, Boiteux MC, Richard MA. Patients' testimonies, feelings, complaints and emotional experiences with dermatoses on open social media: The French infodemiologic patient's free speech study. J Eur Acad Dermatol Venereol. 2024 Feb 5. DOI: 10.1111/jdv.19781. Epub ahead of print. PMID: 38314863.