Patients and Doctors Have Differing Opinions on AD Symptoms

Symptoms leading to a negative feeling in patients with atopic dermatitis are discordantly represented in the scientific literature.

Patients’ and physicians’ views on symptoms leading to negative feeling in atopic dermatitis (AD) are misaligned, according to Claire Feeney, PhD. She and her colleagues have conducted a new study comparing the AD symptom terminology most frequently used on social media with that which appears most frequently in the scientific literature. The study was published in the Journal of the European Academy of Dermatology and Venereology.

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

Social media had more negative than positive mentions

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

Relevant scientific literature was identified using searches for Alzheimer’s disease and eczema in English language articles published between 2000 and 2020. Social media searches generated over 3 million mentions, including most were on Twitter (55.2%), followed by Tumblr (12.2%). ), Instagram (6.3%) and Reddit (5.1%). The search for scientific literature produced more than 1,500 scientific publications, with the British Journal of Dermatology publishing the most articles on AD and QOL.

On social media, there were more negative than positive mentions, Dr. Feeney observed. “The mentions that elicited the most negative feelings were ‘rash’ and ‘pain,'” she said. “‘Sleep’ and ‘pain’ were most often mentioned together. Among symptoms of Alzheimer’s disease , the mention of ‘face’ and ‘hands’ were the main drivers of negative sentiment.

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

AD located on the hands and face linked to the most negative feeling

In social media mentions of pain (>17,000 mentions), the terms “help,” “sleep,” and “itch” were common, with 4,466, 4,009, and 3,951 mentions, respectively. Analysis of sleep mentions revealed that the terms most associated with negative feeling were ‘pain/painful’ (7,476 mentions) and ‘itchy/itchy’ (4,333 mentions).

AD on the hands and face was 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 they were in social media posts. “In the scientific literature, ‘pruritus’ and ‘depression’ were the most common symptoms,” notes Dr. Feeney.

The patient burden terms associated with the quality of life terms were AD severity/disease, dermatological quality of life index, and pruritus, which had 145, 95, and 83 mentions, respectively. When considering terms related to signs and symptoms, ‘pruritus’ (83 mentions), ‘depression’ (42 mentions) and ‘sleep’ (42 mentions) were the most common. (Figure).

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

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