Hôpital Saint-Antoine, Service de Chirurgie Orthopédique, 184 rue du Faubourg Saint-Antoine, 75012, Paris, France.
School of Medicine, Georgetown University, 3900 Reservoir Rd NW, Washington D.C., USA.
Cancer Treat Res Commun. 2023;37:100773. doi: 10.1016/j.ctarc.2023.100773. Epub 2023 Nov 3.
As there is an increasing reliance on the internet for medical information, patients diagnosed with rare diseases have turned to online community forums to share information about their diagnoses. These forums help patients to gather and share information about their experience with disease. Additionally, these platforms enable patients to build unique connections based on their shared experiences. The objective of this study was to review shared posts in online community forums by individuals with soft tissue sarcomas to better understand commonly discussed themes. This information may improve the physicians' understanding of patients' concerns and feelings at the time of diagnosis and treatment.
We entered "sarcoma discussion forum" in search engines to identify internet discussion boards. Four major discussion forums were analyzed, and posts written between January 1, 2017 through May 1, 2022 addressing soft tissue sarcomas present in the upper and lower extremities were collected. Each post was analyzed by the two investigators in three steps (open coding, axial coding, and selective coding).
A total of 506 posts were included in the final analysis. We used twenty-seven axial codes and four selective codes. Emotional Aspects/Connecting with Others was the most common theme (77 % of posts) followed by Information Support: Treatment (38 % of posts), Information Support: Diagnosis (24 % of posts) and Information Support: Recovery (21 % of posts).
The most prevalent theme was centered on emotional aspects of these patients' journeys, highlighting the importance of providing resources to address emotional support for patients with soft tissue sarcoma and their families.
Qualitative research study.
由于人们越来越依赖互联网获取医学信息，因此被诊断为罕见病的患者已经转向在线社区论坛来分享有关其诊断的信息。这些论坛帮助患者收集和共享有关其疾病经历的信息。此外，这些平台使患者能够基于共同的经历建立独特的联系。本研究的目的是审查患有软组织肉瘤的个体在在线社区论坛中发布的共享帖子，以更好地了解常见的讨论主题。这些信息可以提高医生在诊断和治疗时对患者关注和感受的理解。
我们在搜索引擎中输入“肉瘤讨论论坛”，以识别互联网讨论板。分析了四个主要的讨论论坛，并收集了 2017 年 1 月 1 日至 2022 年 5 月 1 日期间针对上肢和下肢软组织肉瘤发布的帖子。两位研究者通过三个步骤（开放编码、轴向编码和选择性编码）对每个帖子进行分析。
最终分析共纳入 506 篇帖子。我们使用了二十七个轴向代码和四个选择性代码。情感方面/与他人建立联系是最常见的主题（77%的帖子），其次是信息支持：治疗（38%的帖子）、信息支持：诊断（24%的帖子）和信息支持：康复（21%的帖子）。
最普遍的主题是围绕这些患者旅程的情感方面展开的，这突出了为软组织肉瘤患者及其家属提供解决情感支持资源的重要性。
级别 IV：定性研究。
