Carden Craig P, Jefford Michael, Rosenthal Mark A
Department of Clinical Haematology and Medical Oncology, Royal Melbourne Hospital, Parkville, Victoria, Australia.
Eur J Cancer. 2007 Jul;43(10):1574-80. doi: 10.1016/j.ejca.2007.04.016. Epub 2007 Jun 1.
Clinical trials are critical to improving patient outcomes, but participation in cancer clinical trials is low. Patient understanding of clinical trial process is also limited. Patients are increasingly using the Internet as a source of information. It is critical that such Internet-based information is relevant, current, balanced, and easy to access and navigate. We critically reviewed seven international online resources that provide information for patients/consumers regarding cancer clinical trials.
Seven international websites from North America, Europe and Australia were selected based on profile/usage. Sites were evaluated with respect to their content, readability and appropriateness using a suite of standard assessment tools.
No sites performed well in terms of all assessment criteria. There was substantial variation between sites regarding information provided, content, design and readability. All sites required high literacy levels and assessment using the Standard Assessment of Means tool showed consistent deficiencies.
Although there are numerous websites providing information about cancer clinical trials to patients/consumers, all evaluated sites have several shortcomings. Attention to the content of information, its presentation and the design of Internet resources has an ethical imperative, and is likely to lead to improved patient satisfaction.
临床试验对于改善患者预后至关重要，但癌症临床试验的参与率较低。患者对临床试验过程的理解也很有限。患者越来越多地将互联网作为信息来源。至关重要的是，此类基于互联网的信息要相关、及时、平衡，且易于获取和浏览。我们严格审查了七个为患者/消费者提供有关癌症临床试验信息的国际在线资源。
根据简介/使用情况，从北美、欧洲和澳大利亚选取了七个国际网站。使用一套标准评估工具，从内容、可读性和适宜性方面对这些网站进行评估。
就所有评估标准而言，没有一个网站表现出色。各网站在提供的信息、内容、设计和可读性方面存在很大差异。所有网站都要求较高的文化水平，使用均值标准评估工具进行评估显示存在持续不足。
尽管有许多网站向患者/消费者提供有关癌症临床试验的信息，但所有评估的网站都有若干缺点。关注信息内容、其呈现方式以及互联网资源的设计具有道德必要性，并且可能会提高患者满意度。
