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患者对神经退行性和非神经退行性神经疾病脑捐赠的态度。

Patient attitudes towards brain donation across both neurodegenerative and non-neurodegenerative neurological disorders.

机构信息

Lee Kong Chian School of Medicine, Nanyang Technological University, 11 Mandalay Road, Singapore, 308232, Singapore.

Yong Loo Lin School of Medicine, National University of Singapore, 10 Medical Drive, Singapore, 117597, Singapore.

出版信息

Cell Tissue Bank. 2020 Jun;21(2):265-277. doi: 10.1007/s10561-020-09819-2. Epub 2020 Mar 5.

Abstract

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.

摘要

脑捐赠对于研究至关重要;为了提高脑捐赠率,需要了解可能存在的进入障碍。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,但没有调查过没有神经退行性变的慢性神经疾病患者。本横断面研究纳入了 187 名参与者,其中包括神经退行性疾病(n=122)和非神经退行性疾病(n=65),以比较他们对脑捐赠的态度和偏好。令人鼓舞的是,非神经退行性疾病患者考虑脑捐赠的可能性与神经退行性疾病患者一样大。大约每组有一半的人愿意考虑脑捐赠,并且大多数参与者都不会因为被要求参与脑捐赠而感到冒犯(71%)。在两组参与者中,利他主义的原因,如希望推进医学知识和使其他患者受益,是脑捐赠的主要动机因素,而对家庭成员的压力、对身体变形的恐惧和宗教原因是反对脑捐赠的主要原因。值得注意的是,近三分之二的参与者都同意让他们的家人代表他们做出决定。总体而言,非神经退行性疾病患者与神经退行性疾病患者一样,似乎同样愿意考虑脑捐赠。这是一个重要的发现,因为他们代表了在神经科专家诊所中看到的一个重要人群,在脑捐赠者招募和意识方面可能被忽视。参与脑库的医疗保健专业人员应该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。

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