Janssens A C J W, van Doorn P A, de Boer J B, van der Meché F G A, Passchier J, Hintzen R Q
Department of Neurology, Erasmus MC, Rotterdam, The Netherlands.
Acta Neurol Scand. 2003 Dec;108(6):389-95. doi: 10.1034/j.1600-0404.2003.00166.x.
Studies demonstrating reduced quality of life and psychological well-being in multiple sclerosis (MS) have typically investigated patients within more advanced stages of disease. The aim of the present paper was to evaluate the emotional burden and quality of life of recently diagnosed MS patients and their partners.
Data on health-related quality of life (SF-36), anxiety and depression (Hospital Anxiety and Depression Scale) and disease-related distress (Impact of Event Scale) were obtained in 101 patients and their partners (n=78).
On average 8 months after diagnosis (range 0-24 months), 34% of the patients and 40% of the partners had clinically high levels of anxiety, and 36% of the patients and 24% of the partners had levels of severe distress. Scores of anxiety, depression and distress were higher in patients with more functional limitations (Expanded Disability Status Scale=3.0). Quality of life was significantly poorer in patients compared with controls, particularly among those with higher disability.
Both patients and their partners demonstrated high levels of anxiety and distress in the early period after the diagnosis. These findings indicate careful attention by health care professionals to identify those who may benefit from further psychological support.
多项研究表明，多发性硬化症（MS）患者的生活质量和心理健康状况下降，这些研究通常调查的是疾病处于更晚期阶段的患者。本文旨在评估新诊断的MS患者及其伴侣的情感负担和生活质量。
收集了101例患者及其伴侣（n = 78）与健康相关的生活质量（SF - 36）、焦虑和抑郁（医院焦虑抑郁量表）以及疾病相关痛苦（事件影响量表）的数据。
诊断后平均8个月（范围0 - 24个月），34%的患者和40%的伴侣临床上焦虑水平较高，36%的患者和24%的伴侣有严重痛苦水平。功能受限程度较高（扩展残疾状态量表 = 3.0）的患者焦虑、抑郁和痛苦得分更高。与对照组相比，患者的生活质量明显较差，尤其是残疾程度较高的患者。
患者及其伴侣在诊断后的早期均表现出较高水平的焦虑和痛苦。这些发现表明医疗保健专业人员应密切关注，以识别那些可能从进一步心理支持中受益的人。
