针对软组织肉瘤的在线讨论论坛的主题分析
Alexandra M Stein1, Ambika E Paulson2, Joseph K Kendal3
1Hôpital Saint-Antoine, Service de Chirurgie Orthopédique, 184 rue du Faubourg Saint-Antoine, 75012, Paris, France.
Cancer treatment and research communications
|November 11, 2023
概括
软组织肉瘤患者经常讨论情感挑战,并在在线论坛上寻求支持. 了解这些讨论可以改善患者的护理和情绪支持资源.
科学领域:
- 医疗信息学 医疗信息学
- 定性研究是指质量研究.
- 患者报告的结果
背景情况:
- 人们越来越多地依赖互联网获取医疗信息.
- 患有罕见疾病的患者利用在线论坛进行信息共享和连接.
- 在线社区为患者提供了一个分享经验和建立联系的平台.
研究的目的:
- 分析软组织肉瘤患者在网上论坛上讨论的主题.
- 了解患者在诊断和治疗期间的担忧和感受.
- 为了让医生了解患者的观点.
主要方法:
- 定性研究研究分析在线论坛帖子.
- 搜索了"肉瘤讨论论坛"以确定相关的平台.
- 从四个主要论坛收集和分析了506条帖子 (2017年1月 - 2022年5月),重点是使用开放式,轴向式和选择性编码对四肢软组织肉瘤进行研究.
主要成果:
- 情感方面/与他人建立联系是最常见的主题 (77%).
- 关于治疗 (38%),诊断 (24%) 和恢复 (21%) 的信息支持也是重要的主题.
- 分析确定了27个轴向代码和4个选择性代码.
结论:
- 在网上论坛上,软组织肉瘤患者最担心的是情绪方面的问题.
- 强调为患者及其家人提供情感支持资源的急需.
- 这些发现可以提高医生对患者体验的理解.
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