全国唐氏综合征注册处的全球健康措施。
Global health measures from a National Down Syndrome Registry.
机构信息
Down Syndrome Program, Division of Medical Genetics and Metabolism, Department of Pediatrics, Massachusetts General Hospital, Boston, Massachusetts, USA.
Department of Pediatrics, Harvard Medical School, Boston, Massachusetts, USA.
出版信息
Am J Med Genet A. 2023 Aug;191(8):2092-2099. doi: 10.1002/ajmg.a.63243. Epub 2023 May 14.
People with Down syndrome (DS) have a unique medical profile which may impact views of health. We aimed to study the use of global health measures for DS in a national cohort. We prospectively surveyed parents of individuals with DS from the DS-Connect® registry with validated Patient Reported Outcomes Measurement Information System (PROMIS)® instruments of global health. Analyses included use of scoring manuals and the PROMIS® scoring service, descriptive statistics, and t-tests. We received completed surveys from 223 parents of individuals with DS; previously published limitations of the instrument in this population were shown again. T-scores differed from the available comparative standardized scores to these measures from PROMIS® reference population on Fatigue (p < 0.001) and Global Health (p < 0.001), but not on Pain Interference (p = 0.41).
唐氏综合征（DS）患者具有独特的医学特征，这可能会影响他们的健康观。我们旨在通过 DS-Connect®注册中心前瞻性调查 DS 患者的父母，使用经过验证的患者报告结局测量信息系统（PROMIS®）全球健康测量工具来研究 DS 患者的全球健康指标。分析包括使用评分手册和 PROMIS®评分服务、描述性统计和 t 检验。我们收到了 223 名 DS 患者家长的完整调查回复，该工具之前在该人群中的局限性再次得到了证实。疲劳（p<0.001）和全球健康（p<0.001）的 T 评分与 PROMIS®参考人群的可比标准化评分存在差异，但疼痛干扰（p=0.41）没有差异。
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