“‘You lose your hair, what’s the big deal?’ I was so embarrassed, I was so self-conscious, I was so depressed:” a qualitative interview study to understand the psychosocial burden of alopecia areata

Abstract

Background Alopecia areata (AA) is characterized by hair loss that can affect the scalp and body. This study describes the psychosocial burden of AA. Methods Participants diagnosed with AA who had experienced ≥50% scalp hair loss according to the Severity of Alopecia Tool (SALT) were identified by clinicians. A semi-structured interview guide, developed with expert clinician input, included open-ended questions to explore patients’ experiences of living with AA. Data were thematically analyzed to identify concepts and relationships. Results Participants (n = 45, 58% female, mean age 33.3 years [range 15–72], mean SALT 67.2 [range 0–100]) described the AA diagnosis as “devastating”. Both males and females reported emotional and psychological impacts of AA including feeling sad/depressed (n = 21), embarrassed/ashamed (n = 10) and angry/frustrated (n = 3). Patients felt helpless (n = 5) due to the unpredictability of disease recurrence, and anxious (n = 19) about judgement from others. Many patients avoided social situations (n = 18), which impaired relationships and increased isolation. Coping strategies included concealment of hair loss through wigs or make-up, although fear of the displacement of these coverings also caused anxiety and the avoidance of activities that could result in scalp exposure (n = 22). Some patients became more accepting of AA over time, which lessened the emotional impact, though efficacious treatment was still desired. A conceptual framework was developed, and a conceptual model was created to depict the relationship between the physical signs/symptoms and the associated psychosocial effects of AA. Conclusion AA impairs patients’ emotional and psychological wellbeing, relationships and lifestyles. Greater disease awareness and effective treatments are needed.

Dermatologist and Patient Perceptions of Treatment Success in Alopecia Areata and Evaluation of Clinical Outcome Assessments in Japan

“…Qualitative data collected from interviews with Japanese dermatologists and patients indicated that all nine AA measures were conceptually relevant, appropriate, and clinically meaningful assessments of key AA signs/symptoms. AA was found to substantially impact the health-related quality of life of Japanese patients [ 4 – 9 ].…”

“…The global prevalence of AA is estimated to be 2% [ 2 ], with a slightly higher prevalence of 2.5% reported in Japan [ 3 ]. AA can substantially impact health-related quality of life [ 4 – 9 ]. Most patients with AA experience anxiety, depression, and low self-esteem, which can impair social functioning [ 5 , 6 ].…”

Efficacy of in‐class interleukin‐23 inhibitor switching: risankizumab following guselkumab failure in moderate‐to‐severe psoriasis treatment

“…The reasons for the difference in response after the medication switch remain poorly understood given that guselkumab and risankizumab are both IL-23 p19 inhibitors. 4 Some limitations of the study include the retrospective nature of the analysis, a small sample size, concurrent medication use and the lack of washout of prior treatments. There was also a shorter follow-up time for detecting secondary failures from the risankizumab group compared with the guselkumab group (average of 5Á4 months vs. 13Á2 months).…”

Measuring Patient Quality of Life Following Treatment for Alopecia

“…65 Skindex-16 for AA Skindex-16 for AA is a modification of Skindex-16 for use in patients with AA 66 whose development is still ongoing. 67 To seek information on HRQoL measures, in addition to using regular search engines, there are also certain online information sources that focus on COAs (among them, HRQoL measures), such as PROQOLID (https:// eprovide.mapi-trust.org/about/about-proqolid), which is an online database designed for searching COAs, and the COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) Database of Systematic Reviews (https://database.cosmin.nl/), which is a database dedicated to systematic reviews of outcome measurement instruments. Although not exhaustive, these tools may be considerably helpful in finding appropriate instruments of COAs to suit one's need, such as for clinical practice or research.…”