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大多数骨肉瘤患者寻求情感支持和其他患者经验的信息:主题分析。

Most Patients With Bone Sarcomas Seek Emotional Support and Information About Other Patients' Experiences: A Thematic Analysis.

机构信息

School of Medicine, Georgetown University, Washington, DC, USA.

Faculté de Médecine, Université de Paris, Paris, France.

出版信息

Clin Orthop Relat Res. 2024 Jan 1;482(1):161-171. doi: 10.1097/CORR.0000000000002761. Epub 2023 Jul 11.


DOI:10.1097/CORR.0000000000002761
PMID:37432118
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC10723872/
Abstract

BACKGROUND: Online discussion forums allow individuals who otherwise may be strangers to create a community where they can seek and share information. Patients with bone sarcomas and their support networks use discussion forums dedicated to cancer support. There is a paucity of published reports regarding the care experience of patients with bone sarcomas because studies on online discussion groups have primarily focused on some of the more common cancers, including breast and prostate cancer. Understanding commonly discussed themes among patients with bone sarcomas would allow treating physicians to have a better understanding of patient concerns when providing patient education and counseling. QUESTION/PURPOSE: We performed this study to review posts from bone sarcoma internet discussion boards to establish common themes related to the care experience of patients with sarcomas. METHODS: Online discussion forums were identified using the search term "sarcoma discussion forum." After identifying 12 websites, we excluded closed forum groups, websites with missing or invalid links to forums, and nonpublic forums, such as groups on Facebook. These websites include profiles and photos that are personal, and sufficient author anonymity could not be achieved for this study. Posts written between January 1, 2012, and May 1, 2022, posted on five discussion boards were reviewed and collected until we reached a point of data saturation in which we agreed that the collection of additional posts would not reveal new themes. Discussion threads were filtered to identify posts pertaining to the most common bone sarcomas: chondrosarcoma, Ewing sarcoma, and osteosarcoma. Grounded theory-the methodology of repeated analyses of qualitative data to identify recurring themes or concepts-was used to analyze posts. Caregiver posts were delineated from patient posts and categorized separately for subgroup analysis. Grounded theory, although a qualitative method, endeavors to integrate the strengths inherent in quantitative methods with qualitative approaches. Grounded theory categorizes words, language, and the meanings these imply and seeks to organize and reduce the data gathered into themes or essences, which, in turn, can be fed into descriptions, models, or theories. Our analysis used three reviews of text to assign and group codes based on repeating ideas or concepts. The first review (open coding) aims to assign codes based on the verbatim text included by the author to capture the specific thoughts and ideas of the post. The second review (axial coding) aims to consolidate the ideas of posts by applying broader concepts to each post. The third and final review (selective coding) aims to further consolidate the themes of each post by trying to embody the main message contained in a post. A total of 570 posts from 139 threads were collected and analyzed using grounded theory. Twenty-five axial codes and four selective codes were created. We defined data saturation by the absence of a new open code in the analysis of a block of 50 posts to ensure that signals of saturation were not accepted too early in the analysis. RESULTS: The four selective codes included emotional aspects or connecting with others, information support: diagnosis, information support: treatment, and information support: recovery. Of these four codes, emotional aspects and connecting with others was the most prevalent theme (78% [445 of 570] of posts) followed by information support: treatment (49% [282 of 570] of posts). Information support: diagnosis and information support: recovery were each captured in 15% of posts. CONCLUSION: Analysis of posts reveals that the two most common themes involve seeking out emotional support and information about the experiences of others with various treatment modalities. Although most of the posts we assessed contained experiential information and emotional support rather than directed medical advice, future studies should assess the accuracy of information shared among online sarcoma forums. CLINICAL RELEVANCE: Physicians caring for patients with sarcomas should not only address patient concerns related to medical care, but also provide emotional support directly and assist patients by providing resources to peer support outlets, including online discussion forums. Although we cannot ascertain the proportion of patients who use online sites given the anonymity of posts included, these findings suggest common experiential themes across patients with sarcomas outside their doctors' offices. It is important that providers be aware of reputable forums to provide as resources for their patients. The Musculoskeletal Tumor Society may further benefit from endorsing one or more of these forums and providing physician oversight to monitor misinformation.

摘要

背景:在线讨论论坛允许原本可能陌生的个体创建一个社区,以便他们能够寻求和分享信息。患有骨肉瘤的患者及其支持网络使用专门针对癌症支持的讨论论坛。由于针对在线讨论组的研究主要集中在一些更常见的癌症上,如乳腺癌和前列腺癌,因此关于骨肉瘤患者护理经验的研究报告很少。了解骨肉瘤患者之间常见的讨论主题,将使治疗医生在为患者提供教育和咨询时更好地了解患者的关注点。

目的:我们进行这项研究是为了回顾骨肉瘤互联网讨论板上的帖子,以确定与肉瘤患者护理经验相关的常见主题。

方法:使用搜索词“肉瘤讨论论坛”来确定在线讨论论坛。在确定了 12 个网站后,我们排除了封闭的论坛群组、链接到论坛的网站缺失或无效以及非公开的论坛,如 Facebook 群组。这些网站包括个人资料和照片,作者的匿名程度无法满足这项研究的要求。回顾并收集了 2012 年 1 月 1 日至 2022 年 5 月 1 日发布在五个讨论板上的帖子,直到我们达到数据饱和点,即我们同意收集额外的帖子不会揭示新的主题。将讨论线程过滤为识别与最常见的骨肉瘤有关的帖子:软骨肉瘤、尤文肉瘤和骨肉瘤。使用扎根理论——对定性数据进行反复分析以识别重复出现的主题或概念的方法——来分析帖子。将照顾者的帖子与患者的帖子区分开来,并分别进行分组分析。扎根理论虽然是一种定性方法,但努力将定量方法固有的优势与定性方法相结合。扎根理论对单词、语言和这些词所隐含的含义进行分类,并试图将收集到的数据组织和简化为主题或本质,然后可以将这些主题或本质输入到描述、模型或理论中。我们的分析使用了对文本进行三次审查,根据作者的原文分配和分组代码,以捕获帖子的具体想法和观点。第一次审查(开放编码)旨在根据作者的逐字文本分配代码,以捕捉帖子的具体想法和观点。第二次审查(轴向编码)旨在通过将更广泛的概念应用于每个帖子来整合帖子的想法。第三次也是最后一次审查(选择性编码)旨在通过尝试体现帖子中的主要信息来进一步整合每个帖子的主题。使用扎根理论共收集和分析了 139 个线程中的 570 个帖子。创建了 25 个轴向代码和 4 个选择性代码。我们通过在分析 50 个帖子的块时不出现新的开放代码来定义数据饱和,以确保在分析中不会过早地接受饱和信号。

结果:四个选择性代码包括情感方面或与他人的联系、信息支持:诊断、信息支持:治疗和信息支持:恢复。在这四个代码中,情感方面和与他人的联系是最常见的主题(570 个帖子中有 78%[445 个]),其次是信息支持:治疗(570 个帖子中有 49%[282 个])。信息支持:诊断和信息支持:恢复分别占帖子的 15%。

结论:帖子分析表明,两个最常见的主题涉及寻找情感支持和了解他人接受各种治疗方式的经验。尽管我们评估的大多数帖子都包含体验信息和情感支持,而不是直接的医疗建议,但未来的研究应该评估在线肉瘤论坛上分享的信息的准确性。

临床相关性:照顾肉瘤患者的医生不仅应解决与医疗护理相关的患者问题,还应提供直接的情感支持,并通过向同行支持渠道(包括在线讨论论坛)提供资源来协助患者。尽管我们无法确定由于帖子的匿名性而使用在线网站的患者比例,但这些发现表明肉瘤患者在医生办公室之外存在常见的经验主题。重要的是,提供者应该了解信誉良好的论坛,并将其作为资源提供给患者。肌肉骨骼肿瘤学会(Musculoskeletal Tumor Society)可能会受益于认可一个或多个这样的论坛,并提供医生监督,以监测错误信息。

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