Annette C. and Harold C. Simmons Transplant Institute, Baylor University Medical Center, Dallas, Texas, USA.
School of Medicine, Stanford University, Stanford, California, USA.
Pediatr Transplant. 2020 Nov;24(7):e13837. doi: 10.1111/petr.13837. Epub 2020 Sep 30.
Discrimination based on disability is prohibited in organ transplantation, yet studies suggest it continues in listing practices for intellectual disability and genetic diseases. It is not known if this differs between adult and pediatric programs, or by organ type. We performed an online, forced-choice survey of psychosocial listing criteria for adult and pediatric heart, kidney, liver, and lung transplant programs in the United States. Of 650 programs contacted, 343 (52.8%) submitted complete. A minority of programs had formal listing guidelines for any condition considered (Down Syndrome, Duchenne Muscular Dystrophy, Becker Muscular Dystrophy, DiGeorge Syndrome, and Wolf Hirschhorn Syndrome; and mild [IQ < 70] and severe [IQ < 35] intellectual disability), although a majority had encountered most. Pediatric programs were significantly (P < .02) more lenient in the level of contraindication to listing for all genetic conditions considered except Duchenne Muscular Dystrophy, and for mild and severe intellectual disability. Level of contraindication differed significantly by organ type (heart, lung, liver, and kidney) for Duchenne Muscular dystrophy (P = <.001), Becker Muscular Dystrophy (P < .001), DiGeorge Syndrome (P < .001), Wolf-Hirschhorn syndrome (P = .0012), and severe intellectual disability (P < .001). There is significant variation among transplant programs in availability of guidelines for as well as listing practices regarding genetic diseases and intellectual disability, differing by both adult vs pediatric program, and organ type. Programs with absolute contraindications to listing for specific genetic diseases or intellectual disability should reframe their approach, ensuring individualized assessments and avoiding elimination of patients based on membership in a particular group.
基于残疾的歧视在器官移植中是被禁止的，但研究表明，在智力残疾和遗传疾病的列表实践中仍存在这种歧视。目前尚不清楚这种歧视在成人和儿科项目之间，或根据器官类型是否存在差异。我们对美国成人和儿科心脏、肾脏、肝脏和肺移植项目的心理社会列表标准进行了在线强制选择调查。在联系的 650 个项目中，有 343 个（52.8%）提交了完整的信息。少数项目对任何被考虑的情况都有正式的列表指南（唐氏综合征、杜氏肌营养不良症、贝克肌营养不良症、迪乔治综合征和沃尔夫-赫希霍恩综合征；以及轻度[智商<70]和重度[智商<35]智力残疾），尽管大多数项目都遇到过大多数情况。儿科项目在考虑到的所有遗传情况下，对列表的禁忌症程度明显（P<0.02）更为宽松，除了杜氏肌营养不良症，以及轻度和重度智力残疾。除了杜氏肌营养不良症（P<.001）、贝克肌营养不良症（P<.001）、迪乔治综合征（P<.001）、沃尔夫-赫希霍恩综合征（P=0.0012）和重度智力残疾（P<.001）外，器官类型对禁忌症的水平也有显著差异。在遗传疾病和智力残疾的指南可用性以及列表实践方面，移植项目之间存在显著差异，这既取决于成人与儿科项目，也取决于器官类型。对于特定遗传疾病或智力残疾有绝对禁忌症的项目应重新调整其方法，确保进行个体化评估，并避免因患者属于特定群体而被淘汰。
