Unit of Neuroepidemiology, Foundation IRCCS Neurological Institute C. Besta, Milan, Italy.
Eur J Neurol. 2013 Apr;20(4):681-8. doi: 10.1111/ene.12028. Epub 2012 Dec 6.
Few data are available on the health status of people with multiple sclerosis (PwMS) in the community. We assessed changes in self-perceived health status and health related quality of life of a community-based cohort of PwMS over a decade, and identified predictors of such changes.
In 1999 we started the POSMOS study (Postal Survey of Self-Assessed Health of MS Adults and their Significant Others) on a random sample of 251 adults with MS from the Milan area (mean age 42 years, range 18-71 years), and prospectively assessed changes in self-perceived health status over 11 years. Participants completed the Multiple Sclerosis Quality-of-Life-54 (MSQOL-54) and a general/clinical questionnaire. We re-assessed the cohort in 2004 and 2010, sending the same questionnaires plus the Chicago Multiscale Depression Inventory.
There were 205 (86%) respondents in 2004, 171 (74%) in 2010; 28 (11%) died during the study. Severely impaired [self-determined Expanded Disability Status Scale (EDSS) > 6.5] increased from 19% to 32%. One-fifth remained fully ambulatory (EDSS <4.0): 25% women (median age 44 years [interquartile range, IQR 39-53], median years from diagnosis 16 [IQR 12-19]); and 17% men (median age 40 years [IQR 38-45], median years from diagnosis 14 [IQR 12-17]). Changes in MSQOL-54 composite scores were negligible; but among individual scales, change in health, cognitive function and general health worsened, and social function and emotional wellbeing improved significantly. Depressive symptoms were high and stable.
Multiple sclerosis had a pervasive but inhomogeneous impact on the lives of our MS sufferers. Notwithstanding overall clinical deterioration and aging, hospital admissions and medical consultations decreased, suggesting reduced use of health care resources. By contrast, housing adaptations and home care increased, psychological burden was high and self-perceived cognitive functioning worsened.
社区中多发性硬化症（MS）患者的健康状况数据有限。我们评估了一个基于社区的 MS 患者队列在十年内自我感知健康状况和与健康相关的生活质量的变化，并确定了这些变化的预测因素。
1999 年，我们从米兰地区开始对 251 名 MS 成年人及其重要他人进行了随机抽样的 POSMOS 研究（多发性硬化症成年人自我评估健康状况的邮政调查及其重要他人），并前瞻性地评估了 11 年内自我感知健康状况的变化。参与者完成了多发性硬化症生活质量 54 项（MSQOL-54）和一般/临床问卷。我们在 2004 年和 2010 年重新评估了队列，发送了相同的问卷以及芝加哥多尺度抑郁量表。
2004 年有 205 名（86%）应答者，2010 年有 171 名（74%）；研究期间有 28 人死亡。严重受损[自我确定的扩展残疾状况量表（EDSS）> 6.5]从 19%增加到 32%。五分之一的人仍能完全行走（EDSS <4.0）：25%的女性（中位年龄 44 岁[四分位数范围，IQR 39-53]，从诊断到中位年龄 16 年[IQR 12-19]）；17%的男性（中位年龄 40 岁[四分位数范围，IQR 38-45]，从诊断到中位年龄 14 年[IQR 12-17]）。MSQOL-54 综合评分的变化可以忽略不计；但在个别量表中，健康、认知功能和一般健康状况恶化，社会功能和情绪健康显著改善。抑郁症状较高且稳定。
多发性硬化症对我们的 MS 患者生活产生了普遍但不均匀的影响。尽管整体临床恶化和老龄化，但住院和就诊次数减少，表明对医疗保健资源的使用减少。相比之下，住房适应和家庭护理增加，心理负担加重，自我感知认知功能恶化。
