Understanding patient experiences with scarring alopecia: a qualitative study with management implications

Abstract

Introduction: Alopecia can have a significant negative impact on patient's lives. The objective of this study is to describe some of the emotional and psychological challenges that affect women with scarring alopecia (SA).

Methods: A qualitative study design was used with open-ended, individual interviews with 10 women with biopsy-proven SA. Interviews were audio-taped, transcribed verbatim and analyzed thematically using ATLAS.ti analysis software.

Results: Four overarching major themes (with several subthemes) emerged including the following: the negative emotional impact of SA, difficulties with concealing hair loss, negative experiences with diagnosis/management, and the importance of support from others. Patients reported that many of these issues were under-emphasized during doctor visits.

Conclusion: Analysis of patient responses indicated that patients with SA contend with significant emotional and psychological sequelae of their diagnosis.

Keywords: Hair loss; central centrifugal cicatricial alopecia; cicatricial alopecia ethnic hair; quality of life; scarring alopecia.