von Steinbuechel Nicole, Richter Sylvia, Morawetz Carmen, Riemsma Rob
Medical Psychology, Geneva, Switzerland.
Curr Opin Neurol. 2005 Dec;18(6):681-91. doi: 10.1097/01.wco.0000194140.56429.75.
Health-related quality of life is a new outcome variable in neurology. Several generic measures aim at assessing this variable in adults with neurological diseases. Disease-specific measures are still rare; however, individuals with neurological diseases frequently suffer from cognitive impairment, yet are often excluded from health-related quality of life investigations. When included in such studies, cognitive functioning is not monitored via neuropsychological evaluation, possibly leading to methodological problems. Papers from May 2004 until July 2005 are reviewed with respect to psychometric quality and information about persons after traumatic brain injury, stroke, Parkinson's disease or dementia.
Several new cross-sectional and longitudinal outcome studies are reviewed. The Medical Outcome Study Short Form with 36 items, the Sickness Impact Profile and the Nottingham Health Profile were identified as the most frequently used measures in neurology. For traumatic brain injury, two new generic instrument validations (Life Satisfaction Index-A, Subjective Quality of Life Profile) and one internationally validated disease-specific development (Quality of Life after Brain Injury) were found; for stroke, one disease-specific tool (Burden of Stroke Scale) was identified. In Parkinson's disease, the disease-specific health-related quality of life measure Parkinson's Disease Questionnaire-39 is well validated. In dementia, three dementia-specific instruments (Quality of Life for Dementia, Quality of Life in Late-Stage Dementia Scale and Quality of Life in Alzheimer's Disease Scale) seem to be valid.
In neurology, only a few measures have been developed and validated for respondents with cognitive impairment, often showing poorer validity results than studies involving healthy persons. Health-related quality of life assessment should therefore be validated in the specific diseases and, if necessary, combined with a neuropsychological evaluation and a disease-specific health-related quality of life measure.
健康相关生活质量是神经病学中的一个新的结局变量。有几种通用测量方法旨在评估患有神经系统疾病的成年人的这一变量。针对特定疾病的测量方法仍然很少；然而，患有神经系统疾病的个体经常遭受认知障碍，但在健康相关生活质量调查中却常常被排除在外。当纳入此类研究时，认知功能并非通过神经心理学评估进行监测，这可能会导致方法学问题。本文回顾了2004年5月至2005年7月间有关创伤性脑损伤、中风、帕金森病或痴呆患者的心理测量质量及相关信息的论文。
回顾了几项新的横断面和纵向结局研究。医学结局研究36项简表、疾病影响量表和诺丁汉健康量表被确定为神经病学中最常用的测量方法。对于创伤性脑损伤，发现了两项新的通用工具验证（生活满意度指数A、主观生活质量量表）和一项经过国际验证的特定疾病发展量表（脑损伤后生活质量量表）；对于中风，确定了一种特定疾病工具（中风负担量表）。在帕金森病中，特定疾病的健康相关生活质量测量工具帕金森病问卷-39得到了充分验证。在痴呆症方面，三种特定于痴呆症的工具（痴呆症生活质量量表、晚期痴呆症生活质量量表和阿尔茨海默病生活质量量表）似乎有效。
在神经病学中，针对认知障碍患者开发并验证的测量方法很少，其有效性结果通常比涉及健康人的研究要差。因此，健康相关生活质量评估应在特定疾病中进行验证，如有必要，可结合神经心理学评估和特定疾病的健康相关生活质量测量方法。
