普罗米斯在患有异常性炎症性肌肉病的儿科和成人患者中显示出强大的构造有效性
Emma M Austenfeld1, Sara E Sabbagh1, Melodee Liegl2
1Division of Rheumatology, Department of Pediatrics, Medical College of Wisconsin, Milwaukee, WI, USA.
Rheumatology (Oxford, England)
|September 25, 2025
概括
患者报告结果测量信息系统 (PROMIS) 有效地测量了青少年和成人异常发炎性肌肉病变 (JIIM/IIM) 的与健康有关的生活质量. 普罗米斯显示出良好的有效性和灵敏性,提供了超越传统评估的患者福祉的全面视图.
科学领域:
- 类风湿病学 类风湿病学
- 患者报告的结果
- 与健康相关的生活质量
背景情况:
- 原发性炎症性肌肉病变 (IIM),包括青少年 (JIIM) 和成人发病形式,显著影响患者的生活质量.
- 传统的疾病评估可能无法充分捕捉IIM/JIIM对患者福祉的多方面的影响.
- 患者报告结果测量信息系统 (PROMIS) 提供了一套验证的仪器来测量患者报告的结果.
研究的目的:
- 评估PROMIS仪器在JIIM/IIM患者中的有效性和可靠性.
- 在IIM/JIIM中确定PROMIS分数与临床特征和疾病评估之间的关联.
- 将PROMIS的灵敏度与传统的与健康有关的生活质量 (HRQoL) 仪器进行比较.
主要方法:
- 对父母和被诊断患有IIM的儿科/成人患者进行了PROMIS-49或-57问卷调查.
- 构造有效性是通过将PROMIS得分与已建立的HRQoL工具进行比较来评估的.
- 分析了PROMIS领域与疾病活动量度之间的关联,以及全球损害评估.
主要成果:
- 与参考人群相比,IIM/JIIM患者报告身体功能明显恶化,疼痛干扰增加,疲劳和焦虑.
- PROMIS 证明了与传统 HRQoL 工具的优良内部一致性和良好的构造有效性.
- 父母报告的结果比孩子更糟糕,PROMIS域与疾病活动和全球损害评估的相关性各不相同,通常表现优于SF-36.
结论:
- PROMIS提供了对IIM/JIIM中HRQoL的敏感和细致的评估,传统方法无法完全捕捉到.
- 普罗米斯表现出良好的构造有效性,并且可能比传统的HRQoL措施更敏感,用于评估患者的福祉.
- 建议将PROMIS纳入IIM/JIIM的评估,以全面解决患者的福祉和疾病影响.
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