Pforzheim University, School of Engineering, Pforzheim, Germany.
Basel, Switzerland.
Pneumologie. 2021 Aug;75(8):583-591. doi: 10.1055/a-1481-0037. Epub 2021 May 7.
Use of social media and the Internet has changed the information-seeking behaviour and exchange of experience and information by patients. Passive observation of such online interaction between patients (social media listening) is conducted in order to understand the burden of the disease, symptom perception, and expectations from a patient perspective. For most conditions, it remains to be established how representative the social media user community is for the overall patient population. In this study, we describe internet and social media use in a population of 570 COPD patients from Germany and Switzerland. This study population is a good representation of the overall patient population in Germany and Switzerland with regards to socioeconomic data. Patients were analyzed in an exploratory fashion whether usage of the Internet to obtain disease-specific information and exchanging on COPD via social media is associated with or is independent from certain socioeconomic criteria. About three-fourths of patients indicated using the Internet to search information about COPD and about a third of patients indicated using social media to exchange with others about their disease. Results indicated that among the patients using the Internet to seek information and among those sharing information via social media, patients with very severe COPD (GOLD stage 4) were overrepresented versus milder forms of the disease. Similarly, patients with more advanced educational background were also overrepresented in the groups using social media and Internet in relation to COPD. Differences in mean age were statistically significant, but surprisingly small between social media users and non-users. No relationship with regards to social media and Internet use for COPD were observed for domiciling situation and sex.
社交媒体和互联网的使用改变了患者的信息搜索行为和经验与信息交流方式。通过被动观察患者之间的这种在线互动（社交媒体倾听），可以了解疾病负担、症状感知以及从患者角度对治疗的期望。对于大多数疾病，仍然需要确定社交媒体用户群体在多大程度上能够代表整体患者群体。在这项研究中，我们描述了来自德国和瑞士的 570 名 COPD 患者的互联网和社交媒体使用情况。就社会经济数据而言，该研究人群很好地代表了德国和瑞士的整体患者群体。我们以探索性的方式分析了患者，以确定通过互联网获取特定于疾病的信息以及通过社交媒体就 COPD 进行交流的使用情况是否与某些社会经济标准相关或独立。约四分之三的患者表示使用互联网搜索 COPD 相关信息，约三分之一的患者表示使用社交媒体与他人交流他们的疾病。结果表明，在使用互联网搜索信息的患者中和在通过社交媒体分享信息的患者中，患有非常严重 COPD（GOLD 第 4 阶段）的患者比疾病较轻的患者比例更高。同样，在使用社交媒体和互联网与 COPD 相关的群体中，具有较高教育背景的患者也有更多的代表性。社交媒体用户和非用户之间的平均年龄差异在统计学上有显著意义，但令人惊讶的是，差异非常小。在居住情况和性别方面，没有观察到与 COPD 相关的社交媒体和互联网使用之间的关系。
