TY - JOUR
T1 - Development and assessment of a website presenting evidence-based information for people with multiple sclerosis
T2 - The IN-DEEP project
AU - Colombo, Cinzia
AU - Filippini, Graziella
AU - Synnot, Anneliese J.
AU - Hill, Sophie J.
AU - Guglielmino, Roberta
AU - Traversa, Silvia
AU - Confalonieri, Paolo Agostino
AU - Mosconi, Paola
AU - Tramacere, Irene
PY - 2016/3/2
Y1 - 2016/3/2
N2 - 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.
AB - 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.
KW - Consumer health information
KW - Information dissemination
KW - Internet
KW - Multiple sclerosis
KW - Patient information needs
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U2 - 10.1186/s12883-016-0552-0
DO - 10.1186/s12883-016-0552-0
M3 - Article
VL - 16
JO - BMC Neurology
JF - BMC Neurology
SN - 1471-2377
IS - 1
M1 - 30
ER -