背景:癌症患者越来越多地使用论坛和社交媒体平台来访问健康信息并分享他们的经验,特别是在使用传统的,互补,和综合医学(TCIM)。尽管TCIM在癌症患者中很受欢迎,很少有相关研究使用这些基于网络的来源的数据来探索TCIM在癌症患者中的应用.
目的:这项研究利用多个论坛和社交媒体平台来探索患者的使用,兴趣,以及TCIM对癌症治疗的看法。
方法:从Facebook收集与TCIM相关的帖子(英文),Twitter,Reddit,和从成立到2022年2月的16个健康论坛。进行了手动评估和自然语言处理。进行描述性分析以探索每种症状和癌症类型最常讨论的TCIM模式。进行情感分析以测量每个帖子或评论的极性,从正面和负面情绪的帖子中确定了主题。指南中出现或推荐的TCIM模式是先验确定的。使用潜在的Dirichlet分配进行了探索性主题建模分析,以调查患者对这些模式的看法。
结果:在可用的1,620,755个帖子中,癌症相关症状,例如疼痛(10/10,100%癌症类型),焦虑和抑郁(9/10,90%),睡眠不足(9/10,90%),通常被讨论。大麻是10种癌症类型中7种(70%)最常讨论的TCIM疼痛方式之一,以及恶心和呕吐,食欲不振,焦虑和抑郁,和可怜的睡眠。还确定了总共7个正面和7个负面主题。积极的主题包括TCIM,使症状可控,减少对药物的需求及其副作用。认为TCIM和常规治疗不是相互排斥的,对常规治疗的不耐受可能促进TCIM的使用。相反,TCIM被认为导致患者拒绝常规治疗或延误诊断和治疗。医生对TCIM的无知和缺乏有关TCIM的信息可能是其使用的障碍。探索性分析表明,TCIM建议在患者中得到了很好的讨论;然而,这些模式也用于许多其他适应症.其他值得注意的话题包括对大麻合法化的担忧,穴位按摩技术,和积极的冥想体验。
结论:使用机器学习技术,社交媒体和健康论坛为患者生成的有关TCIM使用模式和患者感知的数据提供了宝贵的资源。这些信息将有助于澄清患者的需求和担忧,并为将TCIM纳入癌症治疗的研究提供指导。我们的结果还表明,应该实现有关TCIM的有效沟通,并且医生应该更加开放地与患者积极讨论TCIM的使用。
Patients with cancer are increasingly using forums and social media platforms to access health information and share their experiences, particularly in the use of traditional, complementary, and integrative medicine (TCIM). Despite the popularity of TCIM among patients with cancer, few related studies have used data from these web-based sources to explore the use of TCIM among patients with cancer.
This study leveraged multiple forums and social media platforms to explore patients\' use, interest, and perception of TCIM for cancer care.
Posts (in English) related to TCIM were collected from Facebook, Twitter, Reddit, and 16 health forums from inception until February 2022. Both manual assessments and natural language processing were performed. Descriptive analyses were performed to explore the most commonly discussed TCIM modalities for each symptom and cancer type. Sentiment analyses were performed to measure the polarity of each post or comment, and themes were identified from posts with positive and negative sentiments. TCIM modalities that are emerging or recommended in the guidelines were identified a priori. Exploratory topic-modeling analyses with latent Dirichlet allocation were conducted to investigate the patients\' perceptions of these modalities.
Among the 1,620,755 posts available, cancer-related symptoms, such as pain (10/10, 100% cancer types), anxiety and depression (9/10, 90%), and poor sleep (9/10, 90%), were commonly discussed. Cannabis was among the most frequently discussed TCIM modalities for pain in 7 (70%) out of 10 cancer types, as well as nausea and vomiting, loss of appetite, anxiety and depression, and poor sleep. A total of 7 positive and 7 negative themes were also identified. The positive themes included TCIM, making symptoms manageable, and reducing the need for medication and their side effects. The belief that TCIM and conventional treatments were not mutually exclusive and intolerance to conventional treatment may facilitate TCIM use. Conversely, TCIM was viewed as leading to patients\' refusal of conventional treatment or delays in diagnosis and treatment. Doctors\' ignorance regarding TCIM and the lack of information provided about TCIM may be barriers to its use. Exploratory analyses showed that TCIM recommendations were well discussed among patients; however, these modalities were also used for many other indications. Other notable topics included concerns about the legalization of cannabis, acupressure techniques, and positive experiences of meditation.
Using machine learning techniques, social media and health forums provide a valuable resource for patient-generated data regarding the pattern of use and patients\' perceptions of TCIM. Such information will help clarify patients\' needs and concerns and provide directions for research on integrating TCIM into cancer care. Our results also suggest that effective communication about TCIM should be achieved and that doctors should be more open-minded to actively discuss TCIM use with their patients.