定义超移动性谱系障碍和超移动性埃勒斯-丹洛斯综合征的核心结果集:德尔菲共识研究
Natalie L Clark1, Melissa Johnson1, Amar Rangan1,2
1South Tees Hospitals NHS Foundation Trust, Middlesbrough, UK.
Clinical rheumatology
|October 9, 2024
概括
一个共识确定了30个核心症状的超移动性谱系障碍 (HSD) 和超移动的埃勒斯-丹洛斯综合征 (hEDS). 这一标准化结果集对于评估干预措施和改善HSD/hEDS患者护理至关重要.
科学领域:
- 临床医学 临床医学
- 患者报告的结果
- 类风湿病学 类风湿病学
背景情况:
- 由于症状呈现复杂而多样化,高移动性谱系障碍 (HSD) 和高移动性埃勒斯-丹洛斯综合征 (hEDS) 缺乏标准化的结局措施.
- 这种异质性导致了受影响个人和医疗保健专业人员的诊断和管理不确定性.
- 标准化结果措施对于评估HSD/hEDS干预措施的有效性至关重要.
研究的目的:
- 为儿童和成年人确诊HSD/hEDS.建立一个共识驱动的核心结果集.
- 识别患者和利益相关者最重要的症状,以衡量治疗的影响.
- 为未来的HSD/hEDS研究和临床实践提供一个标准化的框架.
主要方法:
- 一个修改后的Delphi共识研究,涉及三轮和最后一个共识会议.
- 利益相关者包括HSD/hEDS患者,他们的家人/照顾者以及医疗保健专业人员.
- 参与者使用9分利克尔特尺度对74个症状进行了重要评分,共识定义为≥70.0%的关键重要性.
主要成果:
- 在所有利益相关者群体中,共有30个症状达到≥70.0%的关键重要性值.
- 核心结果集包括肌肉骨,社会,疼痛,妇科,泌尿,心理,神经和胃肠道领域的症状.
- 这代表了HSD/hEDS的第一个共识识别的核心成果集,通过多种利益相关者的投入来验证.
结论:
- 确定了30个症状的核心结果集,为HSD/hEDS研究和临床评估提供了一个标准化的衡量标准.
- 这种共识突显了HSD/hEDS的多系统性质,强调需要进行全面评估.
- 进一步的研究可能会探索达到50.0-69.9%的关键重要性值的症状的意义,从而有可能完善核心结果集.
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