A survey on self-assessed well-being in a cohort of chronic locked-in syndrome patients: happy majority, miserable minority
A survey on self-assessed well-being in a cohort of chronic locked-in syndrome patients: happy majority, miserable minority
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DOI：
10.1136/bmjopen-2010-000039
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发表时间：
2011-01-01
期刊：
影响因子：
2.9
通讯作者：
Laureys, Steven
中科院分区：
文献类型：
--
作者：
Bruno, Marie-Aurelie;Bernheim, Jan L.;Laureys, Steven
目的：闭锁综合征(LIS)以构音障碍和四肢瘫痪为主要症状，意识得到保护。传统上，垂直眼球运动或眨眼允许进行编码交流。如果给予适当的医疗护理，患者可以存活数十年。研究慢性LIS患者的生活质量。设计：邀请法国LIS协会168名LIS成员进行问卷调查，内容包括病史、现状和临终问题。采用追忆比较自评量表(ACSA)对患者的总体主观幸福感进行自我评估，其+5和-5锚分别是他们对LIS前最好时期和最差时期的记忆。结果：91例患者(54%)回答，26例因缺乏生活质量数据而被排除。47例患者表示幸福(中位数ACSA+3)，18例不幸福(中位数ACSA-4)。与不快乐相关的变量包括对社区流动性、娱乐活动和言语产出恢复的焦虑和不满。在LIS的时间越长，幸福感越高。58%的人声称他们不希望在心脏骤停的情况下被复苏，7%的人表示希望安乐死。结论：我们的数据强调了针对LIS的活动和娱乐活动的额外姑息努力的必要性以及抗焦虑治疗的重要性。最近受影响的希望死亡的LIS患者应该得到保证，他们很有可能重新获得幸福而有意义的生活。不应避免包括安乐死在内的临终决定，但应提议暂停，以便达到稳定状态。
Objectives: Locked-in syndrome (LIS) consists of anarthria and quadriplegia while consciousness is preserved. Classically, vertical eye movements or blinking allow coded communication. Given appropriate medical care, patients can survive for decades. We studied the self-reported quality of life in chronic LIS patients.Design: 168 LIS members of the French Association for LIS were invited to answer a questionnaire on medical history, current status and end-of-life issues. They self-assessed their global subjective well-being with the Anamnestic Comparative Self-Assessment (ACSA) scale, whose +5 and -5 anchors were their memories of the best period in their life before LIS and their worst period ever, respectively.Results: 91 patients (54%) responded and 26 were excluded because of missing data on quality of life. 47 patients professed happiness (median ACSA +3) and 18 unhappiness (median ACSA -4). Variables associated with unhappiness included anxiety and dissatisfaction with mobility in the community, recreational activities and recovery of speech production. A longer time in LIS was correlated with happiness. 58% declared they did not wish to be resuscitated in case of cardiac arrest and 7% expressed a wish for euthanasia.Conclusions: Our data stress the need for extra palliative efforts directed at mobility and recreational activities in LIS and the importance of anxiolytic therapy. Recently affected LIS patients who wish to die should be assured that there is a high chance they will regain a happy meaningful life. End-of-life decisions, including euthanasia, should not be avoided, but a moratorium to allow a steady state to be reached should be proposed.