Claudio Celeste H, Dizon Zoelle B, October Tessie W
1 Division of Critical Care Medicine, Children's National Health Systems, Washington, DC, USA.
2 Department of Pediatrics, George Washington University School of Medicine, Washington, DC, USA.
Am J Hosp Palliat Care. 2018 Sep;35(9):1174-1180. doi: 10.1177/1049909118763800. Epub 2018 Mar 18.
Accessible information about palliative care available to the public on the Internet is growing. We do not know whether this information is consistent with the current accepted definition of palliative care.
To identify resources on the Internet and social media regarding palliative care and evaluate the information conveyed.
A cross-sectional study of "palliative care" search results.
Top 10 Google websites, top 10 most viewed YouTube videos, and social media platforms, Facebook and Twitter, were searched.
The most popular Google websites were mostly from national organizations promoting palliative care, whose definitions of palliative care consistently mention "quality of life" and "relief from symptoms and stress." None of the websites mentioned children, and 77% cited palliative care as treatment for cancer with less focus on other diseases. No personal stories were included in Google websites, while 60% of YouTube videos included personal stories. Five main themes were generated from 266 YouTube video comments analyzed. The most common theme was emotionality, of which 91% were positive statements. Facebook and Twitter were mostly used by health-care professionals and not the public.
Palliative care resources are mostly positive and consistent with the current definition of palliative care. Major Internet search engines such as Google and YouTube provide valuable insight into information the public receives about palliative care. Future development of Internet resources on palliative care should consider including children and emphasizing palliative care for all life-limiting illnesses.
互联网上可供公众获取的有关姑息治疗的信息正在增加。我们尚不清楚这些信息是否与当前公认的姑息治疗定义一致。
识别互联网和社交媒体上有关姑息治疗的资源,并评估所传达的信息。
对“姑息治疗”搜索结果的横断面研究。
搜索了谷歌排名前十的网站、观看次数最多的前十部YouTube视频以及社交媒体平台脸书和推特。
最受欢迎的谷歌网站大多来自推广姑息治疗的国家组织,其对姑息治疗的定义始终提及“生活质量”以及“缓解症状和压力”。没有一个网站提及儿童,77%的网站将姑息治疗视为癌症治疗,而较少关注其他疾病。谷歌网站中没有包含个人故事,而60%的YouTube视频包含个人故事。对分析的266条YouTube视频评论产生了五个主要主题。最常见的主题是情感性,其中91%是积极陈述。脸书和推特的主要用户是医疗保健专业人员而非公众。
姑息治疗资源大多是积极的,并且与当前姑息治疗的定义一致。谷歌和YouTube等主要互联网搜索引擎为公众获取的有关姑息治疗的信息提供了有价值的见解。未来姑息治疗互联网资源的开发应考虑纳入儿童,并强调针对所有危及生命疾病的姑息治疗。