系统性硬化症患者的支持和信息需求根据诊断以来的时间:一个横截面研究
Sabrina Provencher1,2, Richard S Henry1,2, Carolina Bacalao1
1Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, QC, Canada.
Journal of scleroderma and related disorders
|September 25, 2023
概括
系统性硬化症 (SSc) 患者有不同的支持需求,但最近被诊断的患者需要更多的信息和帮助. 了解这些不断变化的需求对于有效的患者护理和支持计划至关重要.
科学领域:
- 类风湿病学 类风湿病学
- 患者支持 患者支持
- 健康心理学 心理健康心理学
背景情况:
- 系统性硬化症 (SSc) 患者的需求可能因诊断以来的时间而异.
- 关于这些需求如何随着时间的推移而演变,目前存在知识差距.
研究的目的:
- 调查最近诊断的和长期诊断的SSc患者之间的信息和支持需求是否不同.
- 为了比较不同诊断持续时间组的SSc患者的具体需求.
主要方法:
- 一项针对北美多发性硬化症支持小组成员的调查评估了支持小组出席的原因.
- 受访者根据诊断后的时间被分为三组:0-3年,4-9年,10年以上.
- 使用霍赫伯格序列方法的奇平方测试用于分析报告需求的差异.
主要成果:
- 175名SSc患者完成了调查.
- 所有患者都高度重视人际/社会支持和疾病管理信息.
- 最近诊断的患者 (0-3岁) 在大多数领域报告了显著更高的需求,特别是医疗保健,精神和社会/金融/性问题.
结论:
- 系统性硬化症患者表现出不同的支持和信息需求,无论诊断的持续时间.
- 在过去三年内被诊断的患者,与更久以前被诊断的患者相比,对特定类型的支持和信息的需求更高.
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