目的:癌症与迫切需要可理解和可靠的信息有关,这通常不能被网上提供的信息所满足。因此,作为PIKKO项目的一部分,引入了基于网络的知识数据库(WDB),为癌症患者提供质量保证,基于证据的信息。本文旨在提供有关WDB的用法(谁?如何?什么?)和对健康素养的影响的见解。
方法:评估患者调查和自动生成的日志文件数据。两个用户组,患者和患者导航员(PNs),进行了比较。
结果:在整个项目期间,13个PN占所有访问的1/3。413名患者平均使用WDB两次,平均每次在线花费12分钟(PN:每次9分钟,更频繁地)。最感兴趣的三个主题是“治疗”,患者的“营养”和“致癌作用”,和“治疗”,PNs的“自然疗法”和“法律法规/支持”。在接受调查的病人中,69%的人表示WDB有助于做出明智的决定,76%的人找到了他们想要的信息,90%的人认为WDB是提供信息的合适方式。
结论:我们的WDB以数字方式提供了有关癌症及其治疗的重要信息,患者和PNs。在常规癌症护理中,WDB可以提高健康素养和明智的决策。
背景:该研究在DRKS00016703(2019年2月21日,回顾性注册)的德国临床试验注册中进行了回顾性注册。https://www.drks.de/drks_web/navigate。做什么?navigationId=审判。HTML&TRIAL_ID=DRKS00016703。
OBJECTIVE: Cancer is associated with an urgent need for understandable and reliable
information, which is often not satisfied by
information available online. Therefore, as part of the PIKKO project, a web-based knowledge database (WDB) was introduced to provide cancer patients with quality-assured, evidence-based
information. This paper aims to provide insights into the usage (Who? How? What?) and the effects regarding health literacy of the WDB.
METHODS: A patient survey and automatically generated logfile data were evaluated. Two user groups, patients and patient navigators (PNs), were compared.
RESULTS: The 13 PNs were responsible for 1/3 of all accesses over the entire duration of the project. The 413 patients used WDB twice on average and spent an average of 12 min per session online (PNs: 9 min per session, more frequently). The top 3 topics of interest were \'therapy\', \'nutrition\' and \'carcinogenesis\' for the patients, and \'therapy\', \'naturopathy\' and \'legal regulations/support\' for the PNs. Of the patients surveyed, 69% said that WDB was helpful in making informed decisions, 76% found the information they wanted and 90% thought WDB was an appropriate way to provide
information.
CONCLUSIONS: Our WDB provided important
information about cancer and its treatment on a digital way both, to patients and PNs. In routine cancer care, the WDB can improve health literacy and informed decision-making.
BACKGROUND: This study was retrospectively registered in the German Clinical Trial Register under DRKS00016703 (21 Feb 2019, retrospectively registered). https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00016703.