Sato Akira, Aramaki Eiji, Shimamoto Yumiko, Tanaka Shiro, Kawakami Koji
Department of Respiratory Medicine, Yokohama Municipal Citizen's Hospital, Yokohama, Japan.
Design School, Kyoto University, Kyoto, Japan.
JMIR Cancer. 2015 May 18;1(1):e5. doi: 10.2196/cancer.3883.
The advent and spread of the Internet has changed the way societies communicate. A portion of information on the Internet may constitute an important source of information concerning the experiences and thoughts of patients and their families. Patients and their families use blogs to obtain updated information, search for alternative treatments, facilitate communication with other patients, and receive emotional support. However, much of this information has yet to be actively utilized by health care professionals.
We analyzed health-related information in blogs from Japan, focusing on the feelings and satisfaction levels of lung cancer patients or their family members after being notified of their disease.
We collected 100 blogs written in Japanese by patients (or their families) who had been diagnosed with lung cancer by a physician. These 100 blogs posts were searchable between June 1 and June 30, 2013. We focused on blog posts that addressed the lung cancer notification event. We analyzed the data using two different approaches (Analysis A and Analysis B). Analysis A was blog content analysis in which we analyzed the content addressing the disease notification event in each blog. Analysis B was patient's dissatisfaction and anxiety analysis. Detailed blog content regarding patient's dissatisfaction and anxiety at the individual sentence level was coded and analyzed.
The 100 blog posts were written by 48 men, 46 women, and 6 persons whose sex was undisclosed. The average age of the blog authors was 52.4 years. With regard to cancer staging, there were 5 patients at Stage I, 3 patients at Stage II, 14 patients at Stage III, 21 patients at Stage IV, and 57 patients without a disclosed cancer stage. The results of Analysis A showed that the proportion of patients who were dissatisfied with the level of health care exceeded that of satisfied patients (22% vs 8%). From the 2499 sentences in the 100 blog posts analyzed, we identified expressions of dissatisfaction and anxiety in 495 sentences. Our results showed that there were substantially more posts concerning "Way of living, reasons for living, set of values" and "Relationships with medical staff (own hospital)" than in previous studies (Analysis B).
This study provides insight into the feelings of dissatisfaction and anxieties held by lung cancer patients and their families, including those regarding the "Way of living, reasons for living, set of values" and "Relationship with medical staff (own hospital)," which were inaccessible in previous survey analyses. When comparing information obtained from patients' voluntary records and those from previous surveys conducted by health care institutions, it is likely that the former would be more indicative of patients' actual opinions and feelings. Therefore, it is important to utilize such records as an information resource.
互联网的出现和普及改变了社会的交流方式。互联网上的一部分信息可能构成有关患者及其家属经历和想法的重要信息来源。患者及其家属利用博客获取最新信息、寻找替代治疗方法、促进与其他患者的交流并获得情感支持。然而，医疗保健专业人员尚未积极利用这些信息中的大部分。
我们分析了来自日本博客中与健康相关的信息，重点关注肺癌患者或其家属得知病情后的感受和满意度水平。
我们收集了100篇由经医生诊断患有肺癌的患者（或其家属）用日语撰写的博客。这些100篇博客文章在2013年6月1日至6月30日期间可搜索。我们关注涉及肺癌告知事件的博客文章。我们使用两种不同的方法（分析A和分析B）对数据进行分析。分析A是博客内容分析，我们在其中分析了每个博客中涉及疾病告知事件的内容。分析B是患者的不满和焦虑分析。对关于患者不满和焦虑的详细博客内容在单个句子层面进行编码和分析。
这100篇博客文章由48名男性、46名女性和6名未披露性别的人撰写。博客作者的平均年龄为52.4岁。关于癌症分期，I期有5名患者，II期有3名患者，III期有14名患者，IV期有21名患者，57名患者未披露癌症分期。分析A的结果表明，对医疗保健水平不满意的患者比例超过了满意患者的比例（22%对8%）。在分析的100篇博客文章中的2499个句子中，我们在495个句子中识别出了不满和焦虑的表达。我们的结果表明，与之前的研究相比，关于“生活方式、生活理由、价值观”和“与医护人员（自己的医院）的关系”的文章要多得多（分析B）。
本研究深入了解了肺癌患者及其家属的不满和焦虑情绪，包括那些关于“生活方式、生活理由、价值观”和“与医护人员（自己的医院）的关系”的情绪，这些在之前的调查分析中是无法获得的。当比较从患者的自愿记录中获得的信息与医疗机构之前进行的调查中获得的信息时，前者可能更能表明患者的实际意见和感受。因此，将此类记录用作信息资源很重要。
