McLeod Janet E, Clarke David M
Monash University, Department of Psychological Medicine, Monash Medical Centre, Melbourne, Australia.
J Neurol Sci. 2007 Jul 15;258(1-2):4-10. doi: 10.1016/j.jns.2007.03.001. Epub 2007 Apr 19.
Motor neurone disease (MND) is an illness involving the progressive degeneration of upper and lower motor neurones. There is no known cause or cure. The physical aspects of MND frequently receive the majority of attention, with psychosocial aspects accorded secondary importance. We undertook a comprehensive search of the available literature published between 1966 and 2006 on the psychosocial aspects of MND, including quality of life (QoL), depression, social support, life sustaining treatment (LST), coping, spirituality and current practice. The literature identified that QoL correlated more strongly with measures of suffering, social support and hopelessness than with the physical state of the patient. Depression is relatively common (prevalence rates up to 50%), as are other forms of psychological distress in the MND population, and is not associated with illness severity and functional status. Depression strongly correlates with QoL. Social support is often limited for MND patients and this also influences QoL. Hope and hopelessness are important issues for MND patients with hopelessness contributing significantly to suffering and, for some, a desire for hastened death. Choices and decisions about life sustaining treatments pose a burden for patients and carers. Despite the physical and emotional suffering associated with MND, a significant number cope well and find positive meaning in life. Many patients opting for life sustaining treatment report a satisfactory QoL. In conclusion, psychosocial aspects of life are important for patients with MND. Depression and other expressions of distress require recognition and treatment. Issues of hope, spirituality and life and death also require attention in clinical practice. Although guidelines exist to direct physicians to attend to the physical care, there is a distinct lack of guidance to attend to the psychological state of the MND patient.
运动神经元病（MND）是一种涉及上下运动神经元进行性退化的疾病。目前病因不明，也无法治愈。MND的身体方面常常受到大部分关注，而心理社会方面则被视为次要。我们对1966年至2006年间发表的关于MND心理社会方面的现有文献进行了全面检索，包括生活质量（QoL）、抑郁、社会支持、维持生命治疗（LST）、应对方式、精神性和当前实践。文献表明，生活质量与痛苦程度、社会支持和绝望感的衡量指标的相关性，比与患者身体状况的相关性更强。抑郁相对常见（患病率高达50%），MND患者群体中的其他心理困扰形式也很常见，且与疾病严重程度和功能状态无关。抑郁与生活质量密切相关。MND患者的社会支持往往有限，这也会影响生活质量。希望和绝望是MND患者的重要问题，绝望会显著加重痛苦，对一些患者来说，还会导致他们渴望加速死亡。关于维持生命治疗的选择和决策给患者及护理人员带来了负担。尽管MND会带来身体和情感上的痛苦，但仍有相当一部分患者应对良好，并在生活中找到积极意义。许多选择维持生命治疗的患者报告生活质量令人满意。总之，生活中的心理社会方面对MND患者很重要。抑郁和其他痛苦表现需要得到识别和治疗。希望、精神性以及生死问题在临床实践中也需要得到关注。虽然存在指导医生关注身体护理的指南，但明显缺乏指导医生关注MND患者心理状态的指南。
