Psoriasis 2.0: Facebook as a source of disease‐related information for patients with psoriasis

Abstract

Summary Background and objectives The Internet is a commonly used source of health‐related information. Social media allow psoriasis patients to seek and share information about their disease. However, they also involve risks such as misinformation and envy. The aim of this study was to explore the relevance and suitability of Facebook as a source of disease‐related information for patients with psoriasis. Patients and methods Cross‐sectional study consisting of an online survey (11/2017–01/2018). The link was published on a German information website focused on psoriasis. We also collected data about the respondents' general and disease‐related Facebook habits as well as their assessment of opportunities and risks of Facebook in the context of psoriasis. Results 101 participants with psoriasis completed the questionnaire. Of these, 75 % reported using Facebook at least once a month, and 72 % of Facebook users stated that they had searched for disease‐related information on Facebook. Active members of psoriasis‐related Facebook groups deemed Facebook more helpful for coping with psoriasis. 60 % of Facebook users reported unreliable information and 57 % reported sales promotions regarding psoriasis when using Facebook. Conclusions We found that Facebook is a relevant source of information for psoriasis patients. However, the quality of information offered seems insufficient and needs to be improved.

‘Dr. Google, What Is That on My Skin?’—Internet Searches Related to Skin Problems: Google Trends Data from 2004 to 2019

“…The Internet has become an essential source of health-related information as the number of search queries has been rising continuously for many years [ 6 , 7 , 8 , 9 ]. Not only for people who have some symptoms and want to inform themselves prior to consulting a physician, but also for patients seeking for further information like treatment options [ 10 ].…”

Reisevorbereitungen für Patienten mit Psoriasis unter Immunsuppression

“…Einige erklärende Informationen auf Englisch oder idealerweise in der betreffenden Landessprache mit Hinweisen auf die Erkrankung, die nicht infektiösen Eigenschaften der Hauterscheinungen und geeignete Medikamente zur Behandlung sind in dieser Situation hilfreich. Neben den Informationen der Reiseveranstalter finden die Patienten mittlerweile hilfreiche Links in den gängigen Portalen und nutzen in allen Altersgruppen digitale Quellen [21].…”

<p>Optimal Management of Plaque Psoriasis in Adolescents: Current Perspectives</p>

“…However, the nature and quality of this information is not controlled. 45 Adolescents have access to this universal data but, unlike their parents and physicians, they may not be able to judge the quality of the information or impose constraints. It is therefore important to discuss these issues with adolescents and possibly guide them to quality sites, such as institutional websites (for example, in France: “Dermato-Info”, https://dermato-info.fr/fr/les-maladies-de-la-peau/le-psoriasis ; “Resopso”: https://www.resopso.fr/2018/02/05/psoriasis-chez-lenfant/ ) or websites created by patient associations (for example, in France: “France Psoriasis”: https://francepsoriasis.org/lassociation/documentation/fiches-conseil/le-psoriasis-de-lenfant/ ).…”

“…However, the data collected from these networks are likely to have a strong impact on the decisions made by adolescents regarding their disease and treatments. 45 , 46 Thus, we must try to identify the false or inappropriate information found by adolescents on social networks to counterbalance with appropriate information given during consultations. Dermatologists should direct adolescent patients towards associative networks, such as associations of patients that have chat groups for teenage patients (for example, in France, https://francepsoriasis.org/ ).…”