Rothwell P M, McDowell Z, Wong C K, Dorman P J
Department of Clinical Neurosciences, Western General Hospital, Edinburgh.
BMJ. 1997 May 31;314(7094):1580-3. doi: 10.1136/bmj.314.7094.1580.
To compare the judgments of clinicians on which domains of health in the short form questionnaire (SF-36) would be most important to patients with multiple sclerosis with the opinions of patients themselves; to compare assessment of physical disability in multiple sclerosis by a clinician using Kurtzke's expanded disability status scale and a non-clinically qualified assistant using the Office of Population Census and Surveys' (OPCS) disability scale with self assessment of disability and other domains of health related quality of life by patients using the SF-36 and the EuroQol questionnaire; and to compare the scores of patients for each domain of the SF-36 with control data matched for age and sex.
Cross sectional study.
Clinical department of neurology, Edinburgh.
42 consecutive patients with multiple sclerosis attending a neurology outpatient clinic for review or a neurology ward for rehabilitation.
Scores on the SF-36; EuroQol; Kurtzke's expanded disability status scale; the OPCS disability scale.
Patients and clinicians disagreed on which domains of health status were most important (chi 2 = 21, df = 7, P = 0.003). Patients' assessment of their physical disability using the physical functioning domain of the SF-36 was highly correlated with the clinicians' assessment (r = -0.87, P < 0.001) and the non-clinical assessment (r = -0.90, P < 0.001). However, none of the measures of physical disability correlated with overall health related quality of life measured with EuroQol, Quality of life correlated with vitality, general health, and mental health in the SF-36, each of which patients rated as more important than clinicians and for each of which patients scored lower than the controls.
Patients with multiple sclerosis and possibly those with other chronic diseases are less concerned than their clinicians about physical disability in their illness. Clinical trials in multiple sclerosis should assess the effect of treatment on the other elements of health status that patients consider important, which are also affected by the disease process, are more closely related to overall health related quality of life, and may well be adversely affected by side effects of treatment.
比较临床医生对简短健康调查问卷（SF - 36）中哪些健康领域对多发性硬化症患者最为重要的判断与患者自身的看法；比较临床医生使用库尔茨克扩展残疾状态量表对多发性硬化症患者身体残疾情况的评估、非临床专业助手使用人口普查与调查办公室（OPCS）残疾量表对患者身体残疾情况的评估，与患者使用SF - 36和欧洲生活质量调查问卷（EuroQol）对自身残疾情况及健康相关生活质量其他领域的自我评估；比较SF - 36各领域患者得分与按年龄和性别匹配的对照数据。
横断面研究。
爱丁堡神经内科临床科室。
42例连续就诊于神经内科门诊接受复查或神经内科病房接受康复治疗的多发性硬化症患者。
SF - 36得分；欧洲生活质量调查问卷得分；库尔茨克扩展残疾状态量表得分；OPCS残疾量表得分。
患者与临床医生在哪些健康状况领域最为重要的问题上存在分歧（卡方检验，χ² = 21，自由度df = 7，P = 0.003）。患者使用SF - 36身体功能领域对自身身体残疾情况的评估与临床医生的评估高度相关（r = -0.87，P < 0.001），与非临床评估也高度相关（r = -0.90，P < 0.001）。然而，身体残疾的各项测量指标与使用欧洲生活质量调查问卷测量的总体健康相关生活质量均无相关性，生活质量与SF - 36中的活力、总体健康和心理健康相关，患者认为这些领域中的每一个都比临床医生认为的更重要，且患者在这些领域的得分均低于对照组。
多发性硬化症患者以及可能患有其他慢性疾病的患者对自身疾病中的身体残疾情况的关注程度低于临床医生。多发性硬化症的临床试验应评估治疗对患者认为重要的健康状况其他要素的影响，这些要素也受疾病进程影响，与总体健康相关生活质量联系更紧密，且可能会受到治疗副作用的不利影响。
