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[原创翻译]1型脊肌萎缩症自然病程的改变
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NEUROLOGY 2007;69:1931-1936 The changing natural history of spinal muscular atrophy type 1 1型脊肌萎缩症自然病程的改变 Background: Noninvasive ventilation has become increasingly available to spinal muscular atrophy (SMA) patients since the early 1990s. This is expected to have improved survival for SMA type 1 patients. 背景：自90年代早期，非侵入性通气越来越广泛的应用于脊肌萎缩症（SMA）患者，被认为提高了1型脊肌萎缩症患者的生存率。 Objective: To assess whether there has been a change in survival in patients with SMA type 1 between 1980 and 2006. 目的：评价1980年至2006年出生的1型脊肌萎缩症幸存者的病程改变。 Methods: We used deidentified, family-reported data from participants in the International Spinal Muscular Atrophy Patient Registry and obtained additional clinical information through a mail-in questionnaire. 方法：应用来源于国际脊肌萎缩症患者注册处的鉴定、家庭报道数据，并通过邮寄问卷的形式获得更多的临床信息。 One hundred forty-three patients with SMA type 1 were included in the analysis. 纳入143名1型脊肌萎缩症患者。 Survival of patients born in 1995–2006 (n = 78) was compared with that of patients born in 1980–1994 (n = 65), using the Kaplan–Meier method and Cox proportional hazards models with age at death as the outcome. 运用Kaplan–Meier method法和Cox比例风险模型评价出生于1995至2006年的幸存者（78名）和1980至1994年出生患者的死亡年龄。 Results: Patients born in 1995 though 2006 had significantly increased survival compared with those born in 1980–1994 (log-rank test, p < 0.001). 结果：1995至2006年出生的患者的生存率较1980至1994年出生的患者有显著性差异。 In a Cox model, patients born in 1995–2006 had a 70% reduction in the risk of death compared with those born in 1980–1994 (hazard ratio [HR] 0.3, 95% CI 0.2–0.5, p < 0.001) over a mean follow-up of 49.9 months (SD 61.1, median 22.0). 在Cox模型，根据平均49.9个月的随访，1995至2006年出生的患者的死亡风险较1980至1994年出生的患者低70％。 However, when controlling for demographic and clinical care variables, year of birth was no longer significantly associated with age at death (HR 1.0, 95% CI 0.6–1.8, p = 0.9), whereas ventilation for more than 16 h/d, use of a mechanical insufflation–exsufflation device, and gastrostomy tube feeding showed a significant effect in reducing the risk of death. 虽然控制人口统计学和临床护理变量，出生年和死亡年龄不再有显著性相关，但每天使用吸入－排出设备通气超过16小时、胃造瘘喂养显著降低死亡风险。 Conclusion: Survival in spinal muscular atrophy type 1 patients has increased in recent years, in relation to the growing trend toward more proactive clinical care. 结论：近年来1型脊肌萎缩症幸存者增加归功于主动临床护理的增长。 |
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