Akintilo Lisa, Hahn Elizabeth A, Yu Jeong Min April, Patterson Stavonnie S L
Feinberg School of Medicine, Northwestern University, Chicago, Illinois, USA.
Department of Medical Social Sciences, Northwestern University, Chicago, Illinois, USA.
Cutis. 2018 Dec;102(6):427-432.
Central centrifugal cicatricial alopecia (CCCA) is known for delayed presentation and treatment. Identifying care barriers may shorten delays to treatment and improve outcomes. Understanding how CCCA impacts quality of life (QOL) also is important. Objectives of this pilot study were to elucidate the diagnostic experience for CCCA patients and understand how CCCA affects QOL. Patients completed a novel, 53-item, cross-sectional survey (CCCA Barriers to Care and Quality of Life Survey) that was developed by study investigators. The survey was completed in person or by telephone for English-speaking, adult, black female patients diagnosed with CCCA at the Northwestern University Department of Dermatology (Chicago, Illinois) between 2011 and 2017. The importance of the physician's experience with black hair and CCCA, the degree to which respondents were bothered by their CCCA, and median QOL score were noted. Central centrifugal cicatricial alopecia presents a unique set of challenges to obtain care. Lack of physician experience with black hair and CCCA is a barrier to care for many with this disease. Self-esteem of CCCA patients is affected by hair loss.
中心离心性瘢痕性秃发（CCCA）以就诊和治疗延迟而闻名。识别护理障碍可能会缩短治疗延迟并改善治疗效果。了解CCCA如何影响生活质量（QOL）也很重要。这项试点研究的目的是阐明CCCA患者的诊断经历，并了解CCCA如何影响生活质量。患者完成了一项由研究调查人员开发的新颖的、包含53个项目的横断面调查（CCCA护理障碍与生活质量调查）。该调查针对2011年至2017年间在西北大学皮肤科（伊利诺伊州芝加哥）被诊断为CCCA的成年黑人女性英语患者，通过面对面或电话方式完成。记录了医生处理黑人头发和CCCA的经验的重要性、受访者因CCCA而烦恼的程度以及生活质量中位数得分。中心离心性瘢痕性秃发给获得护理带来了一系列独特的挑战。医生缺乏处理黑人头发和CCCA的经验是许多患有这种疾病的人获得护理的障碍。CCCA患者的自尊受到脱发的影响。
