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Patient attitudes towards brain donation across both neurodegenerative and non-neurodegenerative neurological disorders.
Cell and Tissue Banking ( IF 1.4 ) Pub Date : 2020-03-05 , DOI: 10.1007/s10561-020-09819-2
Reudi J W Chan 1 , Sherilyn Seah 2 , Joel Y J Foo 3 , Alisa C W Yong 3 , Nicole S Y Chia 3 , Sherwin J U Agustin 3 , Shermyn X M Neo 4 , Kay-Yaw Tay 4 , Wing-Lok Au 4 , Louis C S Tan 4 , Adeline S L Ng 4, 5
Affiliation  

Brain donations are imperative for research; understanding possible barriers to entry is required to improve brain donation rates. While a few surveys have studied attitudes towards brain banking in patients with neurodegenerative disorders, none have surveyed patients with chronic neurological disorders but without neurodegeneration. This cross-sectional study was conducted on 187 participants, with both neurodegenerative (n = 122) and non-neurodegenerative disorders (n = 65), to compare their attitudes and preferences towards brain donation. Encouragingly, patients with non-neurodegenerative disorders were just as likely to consider brain donation as those with neurodegenerative diseases. Approximately half of each group were willing to consider brain donation, and majority of participants across both groups would not be offended if asked to participate in brain donation (71%). Across both groups, altruistic reasons such as desire to advance medical knowledge and benefit to other patients were the main motivating factors for brain donation, while perceived stress for family members, fears of body disfigurement and religious reasons were the main reasons against brain donation. Of note, nearly two-thirds of all participants were agreeable to allow their family to decide on their behalf. Overall, participants with non-neurodegenerative disorders appeared equally likely to consider brain donation as participants with neurodegenerative disorders. This is an important finding as they represent a significant population seen in specialist neurology clinics who may be overlooked in brain donor recruitment and awareness efforts. Healthcare professionals involved in brain banking should consider actively approaching these potential donors and involving their family members in these discussions.

中文翻译:

神经退行性和非神经退行性神经系统疾病患者对大脑捐赠的态度。

大脑捐赠对于研究来说是必要的;要提高大脑捐赠率,需要了解可能的进入障碍。虽然有一些调查研究了神经退行性疾病患者对脑库的态度,但没有一项调查调查患有慢性神经系统疾病但没有神经退行性疾病的患者。这项横断面研究对 187 名患有神经退行性疾病 (n = 122) 和非神经退行性疾病 (n = 65) 的参与者进行,以比较他们对大脑捐赠的态度和偏好。令人鼓舞的是,患有非神经退行性疾病的患者与患有神经退行性疾病的患者一样有可能考虑捐献大脑。每组中大约有一半的人愿意考虑大脑捐赠,并且如果被要求参与大脑捐赠,两组中的大多数参与者都不会感到被冒犯(71%)。在这两个群体中,利他主义的原因,如渴望提高医学知识和造福其他患者,是大脑捐赠的主要动机,而家庭成员的压力、对身体毁容的恐惧和宗教原因是反对大脑捐赠的主要原因。值得注意的是,近三分之二的参与者同意让家人代表他们做出决定。总体而言,患有非神经退行性疾病的参与者似乎与患有神经退行性疾病的参与者同样有可能考虑大脑捐赠。这是一个重要的发现,因为他们代表了专业神经病学诊所的重要人群,他们在脑捐赠者招募和宣传工作中可能被忽视。参与脑库的医疗保健专业人员应考虑积极接触这些潜在的捐赠者,并让他们的家人参与这些讨论。
更新日期:2020-03-05
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