“‘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

Journal of Patient-Reported Outcomes

Sarah Knight¹  Natalie V. J. Aldhouse¹  Jake Macey¹  Helen Kitchen¹  Brett A. King²  Yves Dutronc³  Fabio P. Nunes³  Kathleen W. Wyrwich⁴  Justin M. Ko⁵  Natasha Mesinkovska⁶ 

[1] Clinical Outcomes Assessment, DRG Abacus (part of Clarivate), The Lexicon, Mount Street, M2 5NT, Manchester, UK;Department of Dermatology, Yale School of Medicine, 333 Cedar Street, LMP 5040, 06520, New Haven, CT, USA;Lilly Bio-Medicines, Eli Lilly and Company, Eli Lilly and Company, Lilly Corporate Center, 46285, Indianapolis, IN, USA;Patient-Focused Outcomes Center of Expertise, Eli Lilly and Company, Lilly Corporate Center, 46285, Indianapolis, IN, USA;Stanford Dermatology, Stanford University School of Medicine, 291 Campus Drive, Li Ka Shing Building, 94305-5101, Stanford, CA, USA;University of California Irvine Dermatology Clinical Research Center, Hewitt Hall Building, 843 Health Sciences Road, Room 1001, 92697, Irvine, CA, USA;

关键词: Alopecia areata;    Quality of life;    Psychosocial;    Qualitative;    Health-related quality of life;    Conceptual model;   

DOI  :  10.1186/s41687-020-00240-7

来源: Springer

【 摘 要 】

BackgroundAlopecia areata (AA) is characterized by hair loss that can affect the scalp and body. This study describes the psychosocial burden of AA.MethodsParticipants 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.ResultsParticipants (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.ConclusionAA impairs patients’ emotional and psychological wellbeing, relationships and lifestyles. Greater disease awareness and effective treatments are needed.

【 授权许可】

CC BY