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. 2016 Mar 2:16:30.
doi: 10.1186/s12883-016-0552-0.

Development and assessment of a website presenting evidence-based information for people with multiple sclerosis: the IN-DEEP project

Cinzia Colombo  1 , Graziella Filippini  2   3 , Anneliese Synnot  4   5 , Sophie Hill  6 , Roberta Guglielmino  7 , Silvia Traversa  8 , Paolo Confalonieri  9 , Paola Mosconi  10 , Irene Tramacere  11
Affiliations

Development and assessment of a website presenting evidence-based information for people with multiple sclerosis: the IN-DEEP project

Cinzia Colombo et al. BMC Neurol. .

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.

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Figures

Fig. 1
Fig. 1
The steps of the IN-DEEP project
Fig. 2
Fig. 2
a IN-DEEP home page. b Graphic presentation of a selection of benefits of interferons
Fig. 3
Fig. 3
Flow-chart
See this image and copyright information in PMC

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