Li Meiqi, Yan Yifan, Kuehlmeyer Katja, Huang Wangshan, Laureys Steven, Di Haibo
International Unresponsive Wakefulness Syndrome and Consciousness Science Institute, Hangzhou Normal University, Hangzhou, China.
Intensive Care Unit, Hangzhou First People's Hospital, Hangzhou, China.
Ther Adv Neurol Disord. 2024 Oct 9;17:17562864241283328. doi: 10.1177/17562864241283328. eCollection 2024.
The diagnosis of and life-sustaining treatment (LST) for patients with disorders of consciousness (DoC) and locked-in syndrome (LIS) have been the subject of intense debate.
We aim to investigate the application of diagnostic knowledge, opinions about the administration of LST, and ethical challenges related to DoC and LIS.
A cross-sectional study.
A survey was conducted among Chinese neurologists. Questionnaires included three vignettes (unresponsive wakefulness syndrome (UWS); minimally conscious state (MCS), and LIS). They were randomly distributed among neurologists from August 2018 to December 2019.
A sample of 360 questionnaires was included (response rate: 78%). Overall, 63% of the participants chose the correct diagnostic category. The neurologists who received the MCS case chose the category more accurately than the neurologists with the UWS ( < 0.001) and LIS case ( = 0.002). Most neurologists preferred never to limit LST for their patients (47%, 63%, and 67% in UWS, MCS, and LIS groups, = 0.052). A large group of neurologists believed UWS patients could feel pain (73%), with no difference from MCS and LIS patients ( > 0.05). Deciding for patients in the absence of surrogates was rated extremely challenging.
A large proportion of Chinese neurologists in our study didn't apply the accurate diagnostic categories to the description of DoC and LIS patients. This calls for more education and training. Most Chinese neurologists were reluctant to limit LST for patients. This may indicate that there may be a need to emphasize the allocation of more resources toward long-term care in China.
意识障碍（DoC）和闭锁综合征（LIS）患者的诊断及生命维持治疗（LST）一直是激烈辩论的主题。
我们旨在调查诊断知识的应用、关于LST实施的观点以及与DoC和LIS相关的伦理挑战。
一项横断面研究。
对中国神经科医生进行了一项调查。问卷包括三个病例 vignettes（无反应觉醒综合征（UWS）；最低意识状态（MCS）和LIS）。从2018年8月至2019年12月，将问卷随机分发给神经科医生。
纳入了360份问卷样本（回复率：78%）。总体而言，63%的参与者选择了正确的诊断类别。收到MCS病例的神经科医生比收到UWS（<0.001）和LIS病例（=0.002）的神经科医生更准确地选择了诊断类别。大多数神经科医生从不希望限制对其患者的LST（UWS、MCS和LIS组分别为47%、63%和67%，=0.052）。一大群神经科医生认为UWS患者会感到疼痛（73%），与MCS和LIS患者无差异（>0.05）。在没有代理人的情况下为患者做决定被认为极具挑战性。
在我们的研究中，很大一部分中国神经科医生没有将准确的诊断类别应用于DoC和LIS患者的描述。这需要更多的教育和培训。大多数中国神经科医生不愿限制对患者的LST。这可能表明在中国可能需要强调将更多资源用于长期护理。
