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Atopic Dermatitis from the Patient’s Perspective: Insights from Text-Mining Analysis of a Cross-sectional Study in US Adults
Background: There is relatively little qualitative information on patient perception of atopic dermatitis (AD) and impact of the disease on their life.
Objective: To assess the impact of AD on patients’ lives through text-mining analysis of an open-ended question included in a cross-sectional study of US adults.
Methods: AD-AWARE (Adults With Atopic dermatitis Reporting on their Experience) was a cross-sectional study that evaluated the disease burden and unmet medical needs among adults (≥18 years) with mild or moderate-to-severe AD. Participants were included if they had an AD diagnosis (ICD-9-CM 691.8 or 692.9 at one site) and at least one visit for AD between January 1, 2013 and December 31, 2014. The analysis presented here is focused on a single question from the study. Participants were asked to describe how AD impacted their life using 5-15 words. The most frequently mentioned words were analyzed and displayed in a word cloud. Co-occurrences of words were assessed using the degree of centrality method (a word with higher centrality was listed more often together with other words across all answers).
Results: Of the 1,519 respondents to the AD-AWARE survey, a total of 639 participants (65.3% female, 72% white, mean age ± standard deviation 42.2 ± 16.9 years) responded to the open-ended question asking them to describe the impact of AD on their life. The most frequent words used to describe AD impact were: itch (n=238; 37%), embarrassed (n=234; 37%), annoyed (n=225; 35%), pain (n=161; 25%) and frustration (n=138; 22%). The words reported most often as the first answer were: annoyed (n=102; 16%), itch (n=68; 11%), embarrassed (n=67; 10%), frustration (n=28; 4%) and pain (n=23; 4%). The words with the highest centrality were annoyed (relative to itch, embarrassment, distraction, inconvenience, frustration) and itch (relative to ugly, dryness and red).
Conclusions: The text-mining analysis indicates that AD patients are most frequently impacted by itching, pain and embarrassment, which are captured by patient-reported outcomes in the AD-AWARE study. This analysis highlights two additional concepts not generally assessed in AD patients: frustration and annoyance. Measuring these concepts would complement the current assessment of AD burden.