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患者报告的治疗心脏amyloidosis的结果:意大利的研究
Alberto Aimo1,2, Lucio Teresi1,3, Vincenzo Castiglione1,2
1Interdisciplinary Center for Health Sciences, Scuola Superiore Sant'Anna, Pisa, Italy.
概括
新的患者报告结果测量 (PROMs) 被称为ITALY问卷被开发为心脏粉样性转静氨酸酶 (ATTR-CA). 这些工具是可行的,并且与现有的生活质量措施相关联.
科学领域:
- 心脏病学 心脏病学
- 患者报告的结果
- 氨基粉症研究研究
背景情况:
- 晶氨酸心肌粉症 (ATTR-CA) 显著影响患者的生活质量 (QoL).
- 目前,ATTR-CA没有特定的患者报告结果指标 (PROM),这阻碍了全面的QoL评估.
- 这种差距需要为ATTR-CA患者开发量身定制的仪器.
研究的目的:
- 开发和验证野生类型 (ATTRwt-CA) 和变种 (ATTRv-CA) 的第一个特异性PROMs.
- 评估在临床环境中使用这些新开发的问卷的可行性.
- 评估新ITALY分数与现有的非ATTR专用QOL指标之间的关系.
主要方法:
- 意大利研究在意大利五个转诊中心连续招募了ATTR-CA的门诊患者.
- 为ATTRwt-CA和ATTRv-CA创建了两个30项问卷,分数从0 (最差) 到100 (最好).
- 140名患者被纳入,其中115名患者在6个月后完成了重新评估,以评估测试-重新测试的可靠性和随时间变化的变化.
主要成果:
- 意大利问卷成功地为ATTRwt-CA和ATTRv-CA开发.
- 调查结果显示,填写问卷是可行的,只有30%的患者在基线时需要帮助.
- 意大利得分与KCCQ和SF-36,特别是KCCQ症状总结和总体总结得分以及SF-36情绪健康和能量/疲劳得分等已建立的QOL指标有很强的相关性.
结论:
- 意大利问卷是第一个专门为ATTRwt和ATTRv-CA设计的PROM.
- 填写这些问卷的可行性支持它们在临床实践中的有用性.
- 意大利的分数与非ATTR特异性质量质量指标有显著的关系,验证了它们捕捉患者观点的能力.
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