Patient Perspectives of the Social, Emotional and Functional Impact of Alopecia Areata: A Systematic Literature Review

Arash Mostaghimi, Lynne Napatalung, Vanja Sikirica, Randall Winnette, Jason Xenakis, Samuel H. Zwillich, Boris Gorsh

Research output: Contribution to journalArticlepeer-review

9 Scopus citations


Introduction: Alopecia areata (AA) is a chronic, autoimmune disease of hair loss, which can significantly affect the emotional and psychological well-being of patients. A systematic literature review was conducted to better understand the burden of AA from the patient perspective. Methods: Embase, MEDLINE and Cochrane databases were searched for published studies (2008–2018) reporting on assessments of health-related quality of life (HRQoL) for patients with AA. Qualitative, and quantitative data were collected. Results: The review included 37 studies encompassing a range of clinical outcome assessment (COA) tools. None of the COA tools were specific for AA, and only one study used the Hairdex scale, which was designed to evaluate HRQoL in patients with disorders of the hair and scalp. All studies reported substantial impact on HRQoL due to AA, both overall and in domains related to personality (i.e. temperament and character), emotions and social functioning. Acute stress was also noted, and several studies identified lack of emotional awareness (alexithymia) in 23–50% of the patients with AA. Conclusions: Although it is well-established that patients with AA experience anxiety and depression, they also experience a decrease in HRQoL in many other areas, including personality, emotions, behaviors and social functioning, and these changes may be accompanied by acute stress and alexithymia. There is a need to achieve consensus on a core set of measures for AA and to develop and validate AA-specific measurement tools for use in future studies, to attain a clearer understanding of the impact of AA on patients. Trial Registration: PROSPERO registration number; CRD42019118646.

Original languageEnglish
Pages (from-to)867-883
Number of pages17
JournalDermatology and Therapy
Issue number3
StatePublished - Jun 2021
Externally publishedYes


  • Alopecia areata
  • Health-related quality of life
  • Psychosocial burden


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