The Utility and Validity of the Alopecia Areata Symptom Impact Scale in Measuring Disease-Related Symptoms and their Effect on Functioning

Abstract

Alopecia areata (AA) is an autoimmune disease that causes hair loss. Although persons with the disease can be physically described as having varying degrees of hair loss, the condition has significant ramifications on an individual’s well-being. We previously reported the preliminary psychometric properties of the Alopecia Areata Symptom Impact Scale (AASIS), a disease-specific measure that asks participants about their AA symptoms and how these symptoms interfere with their daily functioning. The goals of this article are to provide a detailed description of the development of the AASIS items and to offer a psychometric update for the measure. Preliminary items for the AASIS were developed on the basis of responses from 1,649 participants to 125 health-related quality-of-life questions/items from the National Alopecia Areata Registry. Clinicians affiliated with the registry were asked to rate the relevance of these items for content validity. Cluster analysis and clinician ratings were used to reduce the number of items. The resulting 13-item AASIS was administered to 452 participants, who were also cognitively debriefed. Results showed that the AASIS is a valid and reliable measure of AA symptoms and their impact on functioning.