Genetic disease and intellectual disability as contraindications to transplant listing in the United States: A survey of heart, kidney, liver, and lung transplant programs
Genetic disease and intellectual disability as contraindications to transplant listing in the United States: A survey of heart, kidney, liver, and lung transplant programs
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DOI：
10.1111/petr.13837
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发表时间：
2020-09-30
影响因子：
1.3
通讯作者：
Magnus, David
中科院分区：
文献类型：
--
作者：
Wall, Anji;Lee, Gun Ho;Magnus, David
在器官移植中禁止基于残疾的歧视，但研究表明，在列出智力残疾和遗传疾病的做法时，这种歧视仍在继续。目前尚不清楚这在成人和儿科项目之间是否有差异，或者不同的器官类型。我们对美国成人和儿童的心脏、肾脏、肝脏和肺移植项目进行了一项在线的、强制选择的心理社会清单标准调查。在联系的650个项目中，343个（52.8%）提交完成。少数节目对任何考虑到的情况（唐氏综合症、杜氏肌营养不良症、贝克尔肌营养不良症、迪乔治综合症和沃尔夫·赫希霍恩综合症；轻度[智商< 70]和重度[智商< 35]智力残疾）都有正式的清单指南，尽管大多数节目遇到了大多数。除杜氏肌营养不良症和轻度和重度智力残疾外，儿科项目在列出所有考虑的遗传疾病的禁忌症水平上更为宽松（P < 0.02）。不同器官类型（心、肺、肝、肾）对杜氏肌营养不良症的禁忌症水平有显著差异(P =
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 =