开发囊性纤维化应激问卷:测试和验证
Carolyn J Snell1,2, Morgan E Ryan3, Isabel V Bailey3
1Pulmonary Medicine, Boston Children's Hospital, Boston, Massachusetts, USA carolyn.snell@childrens.harvard.edu.
BMJ open respiratory research
|December 3, 2025
概括
新的囊性纤维化压力调查问卷 (CFSQ) 有效地测量了CF成年人的疾病特异性痛苦. 这种经过验证的工具补充了现有的心理健康查,改善了CF患者的护理.
科学领域:
- 心理医学 心理医学
- 慢性疾病管理 慢性疾病管理
- 健康心理学 心理健康心理学
背景情况:
- 囊性纤维化 (CF) 护理指南要求每年使用标准化工具进行焦虑和抑郁查,例如患者健康问卷 (PHQ-9) 和通用焦虑障碍量表 (GAD-7).
- 对糖尿病等慢性疾病的研究表明,疾病特异性痛苦是日常运作的重要预测因素,独立于抑郁水平.
- 需要对CF的疾病特异性痛苦进行验证的测量,以增强当前的心理健康查协议.
研究的目的:
- 开发和验证囊性纤维化应激问卷 (CFSQ) 作为疾病特异性痛苦的衡量标准.
- 评估CFSQ作为CF护理中现有的心理健康查工具的辅助工具的实用性.
主要方法:
- 通过多阶段的患者输入开发一种CF特有的感知压力测量方法.
- 一项多站点验证研究,涉及200名成年CF在三个不同的CF中心.
- 审查CFSQ的因素结构,内部一致性,收有效性和测试-重新测试可靠性.
主要成果:
- 报告显示,CFSQ表现出良好的内部一致性,除了一个子级别外,所有子级别都达到>0.6的截止值.
- 收有效性得到了支持,CFSQ与PHQ-9 (r=0.73) 和GAD-7 (r=0.66) 之间的中等至高相关性.
- 在CFSQ和CFQ-R社会 (r=-0.59) 和治疗负担 (r=-0.63) 分量表之间观察到适度的相关性,与肺功能和BMI的相关性较弱.
结论:
- 囊性纤维化应激问卷 (CFSQ) 是一种有效和可靠的测量方法,用于评估患有CF的成年人的疾病特异性痛苦.
- CFSQ证明了与CF护理和研究中使用的既有心理健康和生活质量指标的强烈融合有效性.
- 在囊性纤维化管理中,CFSQ可以作为现有的心理健康查的宝贵补充工具.
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