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BMC Neurol. 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.

Author information

1
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. cinzia.colombo@marionegri.it.
2
Scientific Direction, Neurological Institute C. Besta IRCCS Foundation, via G. Celoria 11, 20133, Milan, Italy. Graziella.Filippini@istituto-besta.it.
3
Cochrane Multiple Sclerosis and Rare Diseases of the Central Nervous System Review Group, Neurological Institute C. Besta IRCCS Foundation, via G. Celoria 11, 20133, Milan, Italy. Graziella.Filippini@istituto-besta.it.
4
Centre for Health Communication and Participation, School of Psychology and Public Health, College of Science, Health and Engineering, La Trobe University, Plenty Road & Kingsbury Drive, Melbourne, Victoria, 3086, Australia. A.Synnot@latrobe.edu.au.
5
National Trauma Research Institute, Monash University/The Alfred, Level 4, 89 Commercial Road Melbourne, Melbourne, 3004, Victoria, Australia. A.Synnot@latrobe.edu.au.
6
Centre for Health Communication and Participation, School of Psychology and Public Health, College of Science, Health and Engineering, La Trobe University, Plenty Road & Kingsbury Drive, Melbourne, Victoria, 3086, Australia. sophie.hill@latrobe.edu.au.
7
Scientific Research Area, Italian Multiple Sclerosis Foundation (FISM), Via Operai 40, 16149, Genoa, Italy. roberta.guglielmino@aism.it.
8
Scientific Research Area, Italian Multiple Sclerosis Foundation (FISM), Via Operai 40, 16149, Genoa, Italy. silvia.traversa@aism.it.
9
Department of Neuroimmunology, Neurological Institute C. Besta IRCCS Foundation, Via G. Celoria 11, 20133, Milan, Italy. paolo.confalonieri@istituto-besta.it.
10
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. paola.mosconi@marionegri.it.
11
Unit of Neuroepidemiology, Cochrane Multiple Sclerosis and Rare Diseases of the Central Nervous System Review Group, Neurological Institute C. Besta IRCCS Foundation, Via G. Celoria 11, 20133, Milan, Italy. Irene.Tramacere@istituto-besta.it.

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.

PMID:
26934873
PMCID:
PMC4776365
DOI:
10.1186/s12883-016-0552-0
[Indexed for MEDLINE]
Free PMC Article

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