Ford H L, Gerry E, Johnson M H, Tennant A
Department of Neurology, St James's University Hospital Trust, Leeds, UK.
Disabil Rehabil. 2001 Aug 15;23(12):516-21. doi: 10.1080/09638280010022090.
The aim of this study was to ascertain the health status and quality of life of a community based cohort of people with multiple sclerosis.
A postal questionnaire with self-completed measures of impairment, disability, physical dependency and quality of life was sent to a random sample of 203 people with multiple sclerosis from a population register. The sample was stratified according to five disease courses. The population register is of the prevalent population of 760 people with multiple sclerosis resident in the Leeds Health Authority. The register used multiple sources of ascertainment and is prospectively maintained with new incident cases.
The estimated mean age of people with multiple sclerosis is 46 years (SE: 0.85), and mean duration of disease is 14.4 years (SE: 0.69). Almost four in five (78 %) are female, and one in six (17%) live alone. Impairments of balance, vision and memory are common and in all cases there is little difference in the frequency between disease course groups. In contrast, impairments of bladder and bowel are more common in those with a progressive disease course. Disability is more common in those with a progressive disease course but all scores on the SF36 Physical Function scale are low and demonstrate the disabling consequences of the disease, irrespective of disease course. These consequences must contribute to the fact that over two-thirds (68 %) were not employed at the time of the survey. Quality of life does not differ across disease course groups, but rather varies by age and duration.
People with multiple sclerosis experience a range of impairments and disabilities. Those with progressive disease courses experience greater levels of impairment and disability than other groups. There is not a straightforward exchange between health status and quality of life. A measure of subjective quality of life may reflect adjustment to disease, such that, for example, the longer the duration, the older the individual, the more likely the person will report a relatively good quality of life.
本研究旨在确定一个基于社区的多发性硬化症患者队列的健康状况和生活质量。
向从人口登记册中随机抽取的203名多发性硬化症患者发送了一份邮政问卷，其中包含自我填写的损伤、残疾、身体依赖和生活质量测量指标。样本根据五种疾病病程进行分层。该人口登记册涵盖了居住在利兹卫生局的760名多发性硬化症患者的现患人群。该登记册使用了多种确诊来源，并前瞻性地记录新发病例。
多发性硬化症患者的估计平均年龄为46岁（标准误：0.85），平均病程为14.4年（标准误：0.69）。近五分之四（78%）为女性，六分之一（17%）独居。平衡、视力和记忆障碍很常见，在所有病例中，疾病病程组之间的频率差异不大。相比之下，膀胱和肠道障碍在疾病病程呈进展性的患者中更为常见。残疾在疾病病程呈进展性的患者中更为常见，但SF36身体功能量表上的所有得分都很低，表明该疾病具有致残后果，与疾病病程无关。这些后果必然导致超过三分之二（68%）的患者在调查时未就业。生活质量在疾病病程组之间没有差异，而是因年龄和病程而异。
多发性硬化症患者经历了一系列的损伤和残疾。疾病病程呈进展性的患者比其他组经历更高程度的损伤和残疾。健康状况和生活质量之间没有直接的对应关系。主观生活质量的衡量可能反映了对疾病的适应，例如，病程越长、个体年龄越大，患者报告相对良好生活质量的可能性就越大。
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