@article {Kharytaniuke2201作者= {Natallia Kharytaniuk Amir Ala Mazaheri和仇人Pavlou和David j .回答Doris-Eva Bamiou}, title ={成人健康相关的生活质量与古典Infratentorial表面铁尘肺},体积={99}={19},页面= {e2201——e2211} = {2022}, doi = {10.1212 / WNL。出版商000000000188金宝慱官网下载0201115}= {Wolters Kluwer健康,公司代表美国神经病学学会},文摘= {Infratentorial背景和目标表面的铁尘肺(iSS)是一种罕见但禁用首页神经条件特点是进步听力损失和资产和流动性问题。这些神经领域的功能下降与iSS进展可能会影响健康相关的生活质量(HRQoL)。我们研究了成人的HRQoL空间站使用2共同通用的HRQoL措施(健康公用事业指数Mark III (HUI3)和EuroQoL EQ5D水平[5])来确定受影响最严重的领域和评估HRQoL评分和疾病持续时间之间的关系。方法观察性研究是一个匿名在线调查。研究机构伦理委员会批准后,我们联系了专门的国际组织,慈善机构,通过网上搜索和病人团体发现,社交媒体,和协作网络,发布研究信息和链接,邀请他们的成员被诊断为空间站参与。参与要求访问数字设备连接到互联网,确认资格(18岁以上和此前被诊断为iSS),和知情同意参与调查,其中包括一些具体问题(人口、空间站和听力)和HRQoL问卷。调查结果被调查研究电子数据采集软件和分析使用SPSS统计软件包。线性回归分析探讨HRQoL评分和疾病持续时间之间的联系。结果50参与者,60 \ %是男性;中位数(四分位距(差))年龄为60岁(15)。中位数(差)多属性得分HUI3和EQ5D 0.36(0.53)和0.64(0.33),分别。最常受影响的领域(中度或更糟的类别)听力(64 \ %)和疼痛(48 \ %)HUI3和流动性(54 \ %)和疼痛EQ5D (50 \ %)。 There was a weak association between disease duration and multiattribute scores for HUI3 (R = 0.353; adjusted R2 = 0.096; b = -0.008; p = 0.047) but not EQ5D.Discussion Our findings demonstrate low HRQoL scores that capture low functional status in several domains typically affected in iSS, suggesting that iSS has a major adverse effect on quality of life in multiple functional domains. Measures of HRQoL in iSS should be included in clinical and research settings, including treatment trials.EQ5D=EuroQOL-5D; HRQoL=health-related quality of life; HUI3=Health Utilities Index Mark III; IQRs=interquartile ranges; iSS=infratentorial superficial siderosis; NICE=National Institute for Health and Care Excellence; REDCap=Research Electronic Data Capture; VAS=visual analog scale}, issn = {0028-3878}, URL = {//www.ez-admanager.com/content/99/19/e2201}, eprint = {//www.ez-admanager.com/content/99/19/e2201.full.pdf}, journal = {Neurology} }