一个基于网络的知识数据库，用于向癌症患者提供循证信息：PIKKO研究中的应用。

A web-based knowledge database to provide evidence-based information to cancer patients: Utilization within the PIKKO study.

作者信息

Schneider Nico, Altmann Uwe, Brandt Florian, Hübner Jutta, Strauss Bernhard, Keinki Christian

机构信息

Institute of Psychosocial Medicine, Psychotherapy and Psychooncology (IPMPP), Jena University Hospital, Stoystrasse 3, 07740, Jena, Germany.

Department of Psychology, MSB Medical School Berlin GmbH, Berlin, Germany.

出版信息

Support Care Cancer. 2024 Jul 17;32(8):521. doi: 10.1007/s00520-024-08725-7.

DOI:10.1007/s00520-024-08725-7

PMID:39017937

原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11254981/

Abstract

PURPOSE

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.

CONCLUSION

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.

TRIAL REGISTRATION

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.

摘要

目的

癌症患者迫切需要易懂且可靠的信息，但网上现有的信息往往无法满足这一需求。因此，作为PIKKO项目的一部分，引入了一个基于网络的知识数据库（WDB），为癌症患者提供质量有保证、基于证据的信息。本文旨在深入了解WDB的使用情况（何人？如何使用？使用了哪些内容？）及其对健康素养的影响。

方法

对一项患者调查和自动生成的日志文件数据进行了评估。比较了患者和患者导航员（PNs）这两个用户群体。

结果

在项目的整个期间，13名PNs占所有访问量的三分之一。413名患者平均使用WDB两次，每次在线平均花费12分钟（PNs：每次会话9分钟，更频繁）。患者最感兴趣的前三个主题是“治疗”“营养”和“致癌作用”，而PNs的是“治疗”“自然疗法”和“法律法规/支持”。在接受调查的患者中，69%表示WDB有助于做出明智的决定，76%找到了他们想要的信息，90%认为WDB是提供信息的合适方式。