Development and assessment of a website presenting evidence-based information for people with multiple sclerosis: the IN-DEEP project.
BMC Neurol
; 16: 30, 2016 Mar 02.
Article
em En
| MEDLINE
| ID: mdl-26934873
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-ß 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-ß 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.
Texto completo:
1
Base de dados:
MEDLINE
Assunto principal:
Internet
/
Esclerose Múltipla Recidivante-Remitente
/
Esclerose Múltipla
Tipo de estudo:
Prognostic_studies
/
Qualitative_research
Limite:
Adult
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Aged
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Female
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Humans
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Male
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Middle aged
País como assunto:
Europa
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Oceania
Idioma:
En
Ano de publicação:
2016
Tipo de documento:
Article