The symptoms driving negative sentiment in patients with atopic dermatitis are discordantly represented in the scientific literature.

Patient and physician perspectives on the symptoms driving negative sentiment in atopic dermatitis (AD) are not aligned, according to Claire Feeney, PhD. She and her colleagues conducted a novel study comparing AD symptom terminology most frequently used in social media with that most frequently appearing in the scientific literature. The study was published in the Journal of the European Academy of Dermatology and Venereology.

“Often in defining unmet patient needs, we look to the physicians, scientists, and textbooks to define this on behalf of patients,” Dr. Feeney says. “In doing this, we sometimes miss out on hearing the patient’s voice directly. Patients widely use social media to share experiences and frustrations about living with a particular disease. By comparing mentions of patient symptoms in social media sources versus the scientific literature, we aimed to uncover any differences that could help us better define unmet needs in AD from the patient perspective.”

Social Media Had More Negative Than Positive Mentions

The study team used the NetBase platform, an artificial intelligence social listening and audit tool, to scour social media for mentions of AD and eczema between July 2018 and July 2020. The sources included blogs, forums, consumer reviews, Twitter, Instagram, Tumblr, Reddit, and general news, among others.

Relevant scientific literature was identified using searches for AD and eczema in English-language articles published between 2000 and 2020. The social media searches yielded more than 3 million mentions, most of which were on Twitter (55.2%), followed by Tumblr (12.2%), Instagram (6.3%), and Reddit (5.1%). Search of the scientific literature yielded more than 1,500 scientific publications, with the British Journal of Dermatology publishing the most articles about AD and QOL.

On social media, there were more negative than positive mentions, Dr. Feeney observed. “The mentions that drove negative sentiment the most were ‘flare’ and ‘pain,” she says. “’Sleep’ and ‘pain’ were mentioned most often together. Amongst AD symptoms, the mention of ‘face’ and ‘hands’ were the major drivers of negative sentiment.”

When “flare” was mentioned in social media posts (>31,000 mentions), it most frequently appeared with the terms “severe eczema” and “severe,” which had 3,843 and 3,203 mentions, respectively. In contrast, specific descriptors of symptoms of AD, such as “itchy,” “stress,” and “burn” were mentioned less frequently (352, 331, and 272 mentions, respectively).

AD Located on Hands and Face Linked With the Most Negative Sentiment

In the social media mentions regarding pain (>17,000 mentions), the terms “help,” “sleep,” and “itching” were common, with 4,466, 4,009, and 3,951 mentions, respectively. Analysis of the sleep mentions found the terms most associated with negative sentiment were “pain/painful” (7,476 mentions) and “itch/itching” (4,333 mentions).

AD on the hands and face were associated with the most negative sentiment, with “hands” mentioned 1,504 times and “face” mentioned 532 times. The terms “flare” and “pain” were not mentioned as frequently in the scientific literature as in the social media posts. “In the scientific literature, ‘pruritus’ and ‘depression’ were the most frequently occurring symptoms,” Dr. Feeney notes.

Patient burden terms associated with QOL terms were “AD/disease severity,” “Dermatology Life Quality Index,” and “pruritus,” which had 145, 95, and 83 mentions, respectively. When examining sign- and symptom-related terms, “pruritus” (83 mentions), “depression” (42 mentions), and “sleep” (42 mentions) were the most common (Figure).

“Based on our findings, we concluded that symptoms driving negative sentiment in patients with AD are discordantly represented in the scientific literature,” Dr. Feeney says. “This discordance supports the importance of considering patient perspectives and the need to incorporate their perspectives into clinical practice and academic work to improve the evaluation, understanding, and management of AD,”