“‘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
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Published:2020-09-11
Issue:1
Volume:4
Page:
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ISSN:2509-8020
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Container-title:Journal of Patient-Reported Outcomes
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language:en
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Short-container-title:J Patient Rep Outcomes
Author:
Aldhouse Natalie V. J.ORCID, Kitchen HelenORCID, Knight SarahORCID, Macey JakeORCID, Nunes Fabio P.ORCID, Dutronc YvesORCID, Mesinkovska NatashaORCID, Ko Justin M.ORCID, King Brett A.ORCID, Wyrwich Kathleen W.ORCID
Abstract
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.
Funder
Eli Lilly and Company
Publisher
Springer Science and Business Media LLC
Subject
Health Information Management,Health Informatics
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