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. 2020 Sep 11;4(1):76.
doi: 10.1186/s41687-020-00240-7.

"'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

Natalie V J Aldhouse  1 , Helen Kitchen  1 , Sarah Knight  1 , Jake Macey  1 , Fabio P Nunes  2 , Yves Dutronc  2 , Natasha Mesinkovska  3 , Justin M Ko  4 , Brett A King  5 , Kathleen W Wyrwich  6
Affiliations

"'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

Natalie V J Aldhouse et al. J Patient Rep Outcomes. .

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.

Keywords: Alopecia areata; Conceptual model; Health-related quality of life; Psychosocial; Qualitative; Quality of life.

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Conflict of interest statement

Natalie V. J. Aldhouse, Helen Kitchen, Sarah Knight, and Jake Macey are employees of DRG Abacus, a health economic and outcomes research consultancy that provides consultancy for pharmaceutical and biotech companies. Eli Lilly funded DRG Abacus to undertake this research. Fabio P. Nunes and Yves Dutronc are employees and stockholders at Eli Lilly and Company. Natasha Mesinkovska has no potential conflicts of interest. Dr. Justin M. Ko provides consultancy for Eli Lilly and Company. Dr. Brett A. King has served on advisory boards and is a consultant and clinical trial investigator for Concert Pharmaceuticals Inc., Eli Lilly and Company, and Pfizer Inc.; he is a consultant for Aclaris Therapeutics Inc. and Dermavant Sciences Inc. Kathleen W. Wyrwich was an employee at Eli Lilly and Company when this research was conducted, and is a stockholder at Eli Lilly and Company; she is now an employee and stockholder at Pfizer Inc.

Figures

Fig. 1
Fig. 1
Conceptual framework of the effects of alopecia areata
Fig. 2
Fig. 2
Conceptual model of the effects of alopecia areata
See this image and copyright information in PMC

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