Atopic eczema score of emotional consequences—a questionnaire to assess emotional consequences of atopic eczema

Purpose Atopic eczema (AE, atopic dermatitis), one of the most common chronic skin diseases worldwide, can dramatically influence the lives of affected patients as well as the lives of their families. Despite the availability of several questionnaires for assessing the impairment of quality of life, so far the emotional consequences of AE have received limited attention. The purpose therefore was to develop an instrument to assess the emotional consequences of AE in affected adults. Methods The Atopic Eczema Score of Emotional Consequences (AESEC) was developed based on a review of available instruments and by consulting individuals with AE about the emotional consequences of AE through social media. Validation was performed in a test-sample, followed by a large cross-sectional study in patients with AE across nine European countries. AESEC results were compared with the Patient Oriented Eczema Measure (POEM), the Dermatology Life Quality Index (DLQI) and the Hospital Anxiety and Depression Scale (HADS). Results A 28-item questionnaire on emotional consequences of having AE was developed. Applied to 1189 participants, AESEC showed high reliability and correlated well with DLQI, HADS and POEM. More than half (57%) of the respondents were emotionally burdened. Large to very large emotional consequences were reported by 43.8% of those with currently moderate AE, 62.2% with severe AE and 66.7% with very severe AE-symptoms. Conclusion AESEC is a questionnaire for assessing the emotional consequences of living with AE. It may prove useful in evaluating the burden of disease, beyond skin symptoms and time-specific quality of life.