Colombo Cinzia, Filippini Graziella, Synnot Anneliese, Hill Sophie, Guglielmino Roberta, Traversa Silvia, Confalonieri Paolo, Mosconi Paola, Tramacere Irene
Department of Public Health, Laboratory for medical research and consumer involvement, IRCCS Mario Negri Institute for Pharmacological Research, via la Masa 19, 20156, Milan, Italy.
Scientific Direction, Neurological Institute C. Besta IRCCS Foundation, via G. Celoria 11, 20133, Milan, Italy.
BMC Neurol. 2016 Mar 2;16:30. doi: 10.1186/s12883-016-0552-0.
People with multiple sclerosis (MS) are increasingly using the Internet in the daily management of their condition. They search for high-quality information in plain language, from independent sources, based on reliable and up-to-date evidence. The Integrating and Deriving Evidence, Experiences and Preferences (IN-DEEP) project in Italy and Australia aimed to provide people with MS and family members with an online source of evidence-based information, starting from their information needs. This paper reports on the Italian project's website.
Contents, layout and wording were developed with people with MS and pilot-tested. The website was evaluated using an online 29-item questionnaire for ease of language, contents, navigation, and usefulness of information aimed at people with MS, family members and the general population.
The website ( http://indeep.istituto-besta.it/) is structured in multiple levels of information. The first topic was interferons-β for people with relapsing-remitting MS. In all, 433 people responded to the survey (276 people with MS, 68 family members and 89 others). The mean age was 45 years, almost 90% had a high school diploma, about 80% had relapsing-remitting MS, and the median disease duration was seven years. About 90% judged the website clear, understandable, useful, and easy to navigate. Ninety percent of people with MS and family members would recommend it to others. Sixty-two percent reported they felt confident in making decisions on interferons-β after reading the website.
The model was judged clear and useful. It could be adapted to other topics and diseases. Clinicians may find it useful in their relationship with patients.
多发性硬化症（MS）患者在日常病情管理中越来越多地使用互联网。他们从独立来源搜索基于可靠且最新证据的通俗易懂的高质量信息。意大利和澳大利亚的整合与推导证据、经验及偏好（IN-DEEP）项目旨在根据MS患者及其家庭成员的信息需求，为他们提供一个基于证据的在线信息源。本文报告了意大利项目的网站情况。
网站内容、布局和措辞是与MS患者共同制定并进行了预测试。该网站使用一份包含29个条目的在线问卷进行评估，评估内容包括语言难易程度、内容、导航以及针对MS患者、家庭成员和普通人群的信息有用性。
该模式被认为清晰且有用。它可适用于其他主题和疾病。临床医生可能会发现它在与患者的关系中很有用。
