Department of Dermatology, St. George Hospital, University of New South Wales, Kogarah, Australia.
Clin Dermatol. 2012 Jan-Feb;30(1):103-7. doi: 10.1016/j.clindermatol.2011.03.016.
Genetic and acquired bullous dermatoses can severely affect multiple domains of a patient's quality of life (QOL). Integrating formal evaluation of QOL into the clinical evaluation of patients facilitates an objective assessment of disease severity, mapping of disease trajectory, and captures therapeutic intervention outcomes. There have been 5 studies evaluating QOL in autoimmune dermatoses and 4 studies reviewing QOL in the genodermatoses. All literature to date indicates a significant disease burden in this setting. The development of formal QOL instruments has facilitated quantification of QOL deficits in this arena and offers promising tools for patient assessment in the future.
遗传性和获得性大疱性皮肤病会严重影响患者生活质量（QOL）的多个方面。将 QOL 的正式评估纳入患者的临床评估中，有助于对疾病严重程度进行客观评估、描绘疾病轨迹，并捕捉治疗干预的结果。有 5 项研究评估了自身免疫性皮肤病的 QOL，4 项研究回顾了遗传性皮肤病的 QOL。迄今为止，所有文献都表明在这种情况下存在显著的疾病负担。正式 QOL 工具的开发促进了这一领域 QOL 缺陷的量化，并为未来患者评估提供了有前途的工具。
