狼性炎患者报告的结果措施:狼QoL和FACIT-Fatigue的内容有效性
Mona L Martin1, Jennifer N Hill1, Jennifer L Rogers2
1Evidera, Patient Centered Research, Bethesda, MD, USA.
Journal of patient-reported outcomes
|September 30, 2024
概括
狼性炎 (LN) 显著影响生活质量. 虽然现有的工具如FACIT-Fatigue和LupusQoL是相关的,但需要进一步的数据来确认它们在LN患者中的测量特性.
科学领域:
- 腎臟病學 (nephrology) 是一種醫學.
- 类风湿病学 类风湿病学
- 患者报告的结果
背景情况:
- 狼性炎 (LN) 是系统性红斑狼 (SLE) 的严重表现,影响与健康相关的生活质量 (HRQoL).
- 现有的HRQoL指标,如FACIT-Fatigue和LupusQoL,对于SLE得到了验证,但不是专门针对LN.
- 在LN中患者报告的症状需要进一步调查.
研究的目的:
- 评估FACIT-Fatigue和LupusQoL在评估LN患者中的内容有效性和相关性.
- 了解患者的体验和与LN相关的症状.
主要方法:
- 基于面试的定性研究,对诊断为LN的患者进行了采访.
- 包括概念诱导来识别患者的经验和认知面试来评估问卷理解.
- 采访被记录,转录,编码,并以表格进行分析.
主要成果:
- 10名患者接受了FACIT-Fatigue和10名LupusQoL的采访;大多数是女性和黑人,接受维持治疗.
- 患者报告了670种不同的症状,包括疼痛,不适和疲劳.
- 排尿频率和非关节胀被特别归因于LN;患者发现调查是相关的.
结论:
- 临床症状与SLE一致,但可能更深刻,影响日常生活和HRQoL.
- FACIT-Fatigue和LupusQoL显示内容对LN患者的相关性.
- 需要进一步的定量数据,以确定这些工具在LN群体中具有可靠的测量特性.
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