Psychosocial burden and the impact of illness perceptions and stigma on quality of life, anxiety and depression in alopecia areata: results from the Alopecia + Me study

Abstract Background Alopecia areata (AA) can significantly impact patients’ quality of life (QoL) and mental health, leading to increased levels of anxiety and depression. It is unclear whether this impact is more strongly associated with disease severity or patients’ disease perception, and which patients are more likely to have a greater psychological burden. Objectives To examine the psychosocial impact of AA, while focusing on illness perceptions and stigma, aiming to identify high-risk subgroups and key perceptions linked to worse QoL, anxiety and depression. Methods This was a UK cross-sectional online study. It comprised 596 patients with AA who self-reported disease severity and completed the Dermatology Life Quality Index (DLQI), EuroQol 5-Dimensional 5-Level (EQ-5D-5L), Hospital Anxiety and Depression Scale (HADS), Stigma Scale for Chronic Illnesses 8-Item (SSCI-8) and Brief Illness Perception Questionnaire (BIPQ). Results Patients with AA perceived their condition as chronic and life-impacting, with limited personal or treatment control, significant emotional effects and high concern. Many patients reported high levels of anxiety, depression, stigma and impaired QoL, all strongly associated with illness perceptions. Hierarchical regression analyses showed that illness perceptions and stigma explained a higher proportion of variance in QoL, anxiety and depression than disease severity. Cluster analysis identified two distinct patient groups based on illness perceptions, with different levels of QoL, anxiety, depression and stigma. Conclusions AA has a severe psychosocial impact, more strongly linked to patients’ illness perceptions and stigma than disease severity. The identification of two distinct patient profiles based on illness perceptions reveals differences in psychosocial burden, highlighting those at risk of worse outcomes and underscoring the value of evaluating illness perceptions along with stigma in clinical practice to improve patient outcomes.