系统性硬化症中营养信息资源的使用和感知:一种硬化症患者中心干预网络 (SPIN) 队列研究
Nora Østbø1, Elizabeth Yakes Jimenez2, Marie-Eve Carrier3
1Lady Davis Institute for Medical Research, Jewish General Hospital, Montreal, Quebec, Canada, and Department of Health Management and Health Economics, University of Oslo, Norway.
Clinical and experimental rheumatology
|April 4, 2024
概括
患有全身性硬化症 (SSc) 的人通常会从各种来源寻求营养信息. 传统的医疗保健提供者和SSc患者组织被认为是最值得信赖和最容易获得的资源.
科学领域:
- 营养科学 营养科学
- 类风湿病学 类风湿病学
- 卫生沟通健康沟通
背景情况:
- 系统性硬化症 (SSc) 带来了独特的营养挑战.
- 对于SSc患者来说,获得高质量的营养信息往往是困难的.
研究的目的:
- 确定SSc患者使用不同营养信息资源的使用频率.
- 评估这些资源的可信度,可访问性,可理解性和个性化程度.
主要方法:
- 一个国际队列的SSc患者完成了以患者为中心的干预网络营养信息资源调查.
- 参与者报告了使用情况,并在四个类别中对26个资源进行了评分:医疗保健提供者,在线来源,印刷材料和事件.
主要成果:
- 727名参与者的94%使用了至少一个营养信息资源.
- 医疗保健提供者是使用最多的 (86%),其次是印刷 (68%) 和在线 (66%) 资源.
- 传统的医疗保健提供者,SSc患者组织和支持小组在可信度和可访问性方面获得了最高的评分.
结论:
- SSc患者使用各种各样的营养信息资源.
- 值得信赖的资源通常涉及传统的医疗保健提供者,可信的机构或个人联系.
- 需要进一步的研究来建立SSc营养的证据基础,并评估信息质量.
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