Kimberly Laura L, Alfonso Allyson R, Ramly Elie P, Kantar Rami S, Caplan Arthur L, Rodriguez Eduardo D
An assistant research scientist in the Hansjörg Wyss Department of Plastic Surgery at NYU Langone Health in New York City, where she is also an associate in the Department of Population Health Division of Medical Ethics.
A medical student at NYU School of Medicine and a predoctoral research fellow investigating facial transplantation in the Hansjörg Wyss Department of Plastic Surgery at NYU Langone Health in New York City.
AMA J Ethics. 2019 Nov 1;21(11):E980-987. doi: 10.1001/amajethics.2019.980.
Facial transplantation has gained increasing acceptance as a treatment option to improve quality of life (QoL) for persons suffering from severe facial disfigurement. Despite its growth, the field has yet to establish a consistent approach to assessing QoL in face transplant candidates and recipients that includes integration of meaningful patient-reported outcomes. The published literature suggests that face transplant programs currently use a wide variety of assessment tools and strategies. Moreover, confusion remains as to how best to weigh patients' lived experiences and incorporate them into QoL assessments. Qualitative research can illuminate the dimensions of QoL that are meaningful to face transplant candidates and recipients. Coupled with collaboration and data sharing across face transplant programs, qualitative research will help to bring conceptual clarity and transparency to the assessment process.
面部移植作为一种改善严重面部毁容患者生活质量(QoL)的治疗选择,越来越被人们所接受。尽管该领域有所发展,但尚未建立一种一致的方法来评估面部移植候选者和接受者的生活质量,其中包括整合有意义的患者报告结果。已发表的文献表明,目前面部移植项目使用各种各样的评估工具和策略。此外,对于如何最好地权衡患者的生活经历并将其纳入生活质量评估,仍然存在困惑。定性研究可以阐明对面部移植候选者和接受者有意义的生活质量维度。再加上面部移植项目之间的合作和数据共享,定性研究将有助于使评估过程在概念上更加清晰和透明。