RT期刊文章SR电子T1晚发性疾病筛主要影响身体健康的生活质量领域摩根富林明神经病学神经学乔FD Lippincott Williams &威尔金斯SP 1688 OP 1692做10.1212/01. wnl.0000142597.69707.78首页 VO 63 9 A1 m .开出接触A1。A1 C.J.W.詹森l .功率因数温克尔A1 K。A . Sieradzan A1。J.J.重用者A1 p·A·范·多尔恩A1。t . Van der Ploeg年2004 UL http://n.ne首页urology.org/content/63/9/1688.abstract AB目的:调查患者生活质量在国际人口晚发性疾病筛。方法:生活质量数据(SF-36)、年龄、性别、疾病持续时间、轮椅使用,收集和使用人工通风与筛210名成年人疾病来自澳大利亚、德国、荷兰、英国、和美国。SF-36分数比较国家之间和与病人相关特征。此外,对于荷兰组(n = 51),比较与一般人群和1年进行随访评估。结果:国与国之间无显著差异被发现的四个身体健康量表。functioning-emotional意味着生命力的分数,角色,和心理健康量表之间的不同国家,但这些差异并不一致。 Wheelchair use was associated with lower physical and social functioning scores (B = −23.6 and −15.1, p < 0.001), and the use of artificial ventilation with lower physical functioning scores (B = −8.4, p = 0.004). Patients reported significantly poorer quality of life than the general population on the physical functioning, role functioning-physical, general health, vitality, and social functioning scales. No significant differences in SF-36 scores were found between the baseline and 1-year follow-up measurement. Conclusions: Patients with late-onset Pompe disease are, on average, markedly affected on the physical health domains of quality of life, but score only slightly lower than the general population on the mental health domains.

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