The most impactful aspects of living with alopecia areata among patients commencing systemic treatments: evaluating patients' perspectives to guide therapy.

BACKGROUND: Chronic persistent alopecia areata (CPAA), defined by an episode duration > 12 months, tends not to remit spontaneously and patients with CPAA are candidates for systemic therapy. The burden of CPAA is not entirely explained by the severity of scalp hair loss. CPAA widely affects physical and psychosocial aspects of health and wellbeing. Exploring patients' perspectives on these domains of impact among those commencing systemic treatments will shed light on patient expectations from systemic treatments and the most relevant patient-reported outcomes.

OBJECTIVES: To understand patients' perspectives on the key impact domains of CPAA that are the most important motives for patients when deciding whether to commence a systemic therapy.

METHODS: Patients receiving systemic therapy for CPAA who completed an online survey that included two patient-reported questionnaires, the Assessment of Quality of Life-8 Dimensions (AQoL-8D) and the Alopecia Areata Patient Priority Outcome (AAPPO), were invited to participate in a focus group to explore the key impact domains of AA, beyond scalp hair loss severity, that had led them to commence systemic therapy. Focus group discussions were transcribed and thematically analysed using NVivo v14. Quantitative data were analysed using SPSS v26.

RESULTS: Quantitative data (n = 44 online surveys) revealed significant impairment in psychosocial dimensions, contrary to physical dimensions, in our patients, based on the AQoL-8D. None of the health-related quality of life (HRQoL) dimensions were associated with the extent of scalp hair loss, assessed by the AAPPO. Focus group participants (n = 31) revealed AA-related physical and psychosocial priorities, which emerged as 13 subthemes within three main themes: physical, psycho-emotional and social. Eyelash and eyebrow appearance were the most frequent physical impacts. A sense of frustration and/or despair and the impact of long-term camouflaging in social activities were the most frequent subthemes within their attributed themes.

CONCLUSIONS: Facial hair loss and various psychosocial domains of HRQoL are key impact domains of AA, other than scalp hair loss, in patients commencing systemic treatments. Perceived domains that were considered important by patients can serve as a foundation of patient-centred criteria of candidacy for systemic treatments, contributing to the timely initiation of systemic treatments in patients suffering from considerable disease burden. Further research should aim at the integration of our findings into the clinical setting.