Benito-León Julián, Morales José Manuel, Rivera-Navarro Jesús, Mitchell Alex
tment of Neurology, Móstoles General Hospital, Madrid, Spain.
Disabil Rehabil. 2003 Dec 2;25(23):1291-303. doi: 10.1080/09638280310001608591.
There is increasing recognition that the global wellbeing of patients with chronic neurological disease is an important outcome in research and clinical practice alike. Many studies involving individuals with multiple sclerosis have demonstrated that the overall wellbeing is not a simple manifestation of impairment or disability. The strongest correlations with health-related quality of life appear to be patient rated emotional adjustment to illness and patient rated handicap. In recent years, health-related quality of life questionnaires that measure the physical, social, emotional, and occupational impact of illness have been developed and validated in populations with MS. Most questionnaires are now available in a range of languages. This development is likely to lead to increasing recognition of neuropsychiatric complications of MS in clinical practice and better quantification of treatment responses in clinical trials.
Further work is required to decide which scale is most suited to which purpose. Assessment of multiple sclerosis-specific health-related quality of life should be included in future clinical trials to provide a complete picture of patients' health status.
人们越来越认识到，慢性神经疾病患者的整体健康状况在研究和临床实践中都是一个重要的结果。许多涉及多发性硬化症患者的研究表明，整体健康状况并非损伤或残疾的简单表现。与健康相关生活质量最强的关联似乎是患者自评的对疾病的情绪调整和患者自评的残疾程度。近年来，已针对多发性硬化症患者群体开发并验证了测量疾病对身体、社会、情感和职业影响的与健康相关生活质量问卷。现在大多数问卷都有多种语言版本。这一发展可能会使临床实践中对多发性硬化症神经精神并发症的认识增加，并在临床试验中更好地量化治疗反应。
需要进一步开展工作来确定哪种量表最适合哪种目的。未来的临床试验应纳入对多发性硬化症特异性与健康相关生活质量的评估，以全面了解患者的健康状况。
