Development and assessment of a website presenting evidence-based information for people with multiple sclerosis: the IN-DEEP project. Issue 1 (December 2016)

• Record Type: Journal Article
• Authors: Colombo, Cinzia; Filippini, Graziella; Synnot, Anneliese; Hill, Sophie; Guglielmino, Roberta; Traversa, Silvia; Confalonieri, Paolo; Mosconi, Paola; Tramacere, Irene
• Is Part Of: BMC neurology. Volume 16:Issue 1(2016)
• Page Start: 1
• Page End: 9
• Publication Date: 2016-12
• Subjects: Multiple sclerosis -- Consumer health information -- Internet -- Information dissemination -- Patient information needs; Neurology -- Periodicals; 616.8005
• DOI: 10.1186/s12883-016-0552-0
• Languages: English
• ISSNs: 1471-2377

Abstract

Abstract Background 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. Methods 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. Results 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. Conclusions 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.