Atopic dermatitis (AD) is a common chronic skin disease with a prevalence of up to 20% in children and up to 10% in adults [1]. There has been an increasing focus on the impact on the quality of life of the patients, family members, and caregivers [2], yet performing surveys to elucidate this is often laborious, time-consuming, and expensive. Social media has been used as a new platform for gaining insights into diseases through surveys, but for AD this has not been adequately tested. We have investigated the results obtained from a web-based survey recruiting respondents from a Facebook group hosted by the Danish Atopic Eczema Patients’ Organization (DAEPO) concerning whether it was representative of the population and if it returned relevant information on their disease.

The survey consisted of 35 close-ended questions with checkboxes and was designed together with DAEPO. The inclusion criteria (self-reported) were being 18 years or older, previously or currently using a topical corticosteroid, and having been diagnosed with AD. No incentives were offered to participants. Data were collected anonymously between November 11 and December 22, 2021. Data collection and storage were compliant with European Union regulations on General Data Protection Regulation (GDPR). For the analysis, respondents were stratified into three groups according to severity as defined by the Patient Oriented Eczema Measure (POEM) instrument.

In total, 140 participants of 182 respondents met the inclusion criteria (recruitment rate 76.9%). Table 1 presents demographics, symptoms, and comorbidities. Table 2 shows health care use and disease management. Representativeness of survey responders (age, gender, and educational level) was investigated using chi-square test for goodness of fit, which confirmed the overrepresentation of younger female respondents with a higher educational level compared to the general Danish population. The limited participation of older adults has likewise been observed in previous studies using social media platforms [3]. Our data also indicated that the severity of AD correlated inversely with educational level in line with previous registry-based results, showing severe AD decreases the chance of completing higher education [4].

The majority of respondents had their AD diagnosis in childhood. Many across the three AD severity groups had asthma and allergy comorbidities. Symptoms such as itch, red rash, exudation, poor night’s sleep, and skin pain were significantly more frequent among patients with severe AD (Table 1). The frequency of dermatology visits did surprisingly not differ significantly between severity groups, whereas reactive treatment use patterns in the last month were observed significantly more in those with severe AD (Table 2). This indicates that many patients with AD are not adequately treated and should have closer contact with the health care system to receive timely and optimal treatment.

In conclusion, we found that social media may be used for disease surveys, although with a risk of lack of representativeness of the general population (ie, favoring those who are female, younger, and well educated). With this in mind, however, outreach through social media is an easy cost-effective way of acquiring a large amount of information and may be a useful platform to obtain relevant disease information on patient-reported outcomes for patients with AD, and female patients in particular.