title: Development and assessment of a website presenting evidence-based information for people with multiple sclerosis: the IN-DEEP project.
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.
authors.affiliation: 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.
authors.forename: Cinzia
authors.initials: C
authors.lastname: Colombo
authors.affiliation: Scientific Direction, Neurological Institute C. Besta IRCCS Foundation, via G. Celoria 11, 20133, Milan, Italy. Graziella.Filippini@istituto-besta.it.|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.
authors.forename: Graziella
authors.initials: G
authors.lastname: Filippini
authors.affiliation: 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.|National Trauma Research Institute, Monash University/The Alfred, Level 4, 89 Commercial Road Melbourne, Melbourne, 3004, Victoria, Australia. A.Synnot@latrobe.edu.au.
authors.forename: Anneliese
authors.initials: A
authors.lastname: Synnot
authors.affiliation: 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.
authors.forename: Sophie
authors.initials: S
authors.lastname: Hill
authors.affiliation: Scientific Research Area, Italian Multiple Sclerosis Foundation (FISM), Via Operai 40, 16149, Genoa, Italy. roberta.guglielmino@aism.it.
authors.forename: Roberta
authors.initials: R
authors.lastname: Guglielmino
authors.affiliation: Scientific Research Area, Italian Multiple Sclerosis Foundation (FISM), Via Operai 40, 16149, Genoa, Italy. silvia.traversa@aism.it.
authors.forename: Silvia
authors.initials: S
authors.lastname: Traversa
authors.affiliation: Department of Neuroimmunology, Neurological Institute C. Besta IRCCS Foundation, Via G. Celoria 11, 20133, Milan, Italy. paolo.confalonieri@istituto-besta.it.
authors.forename: Paolo
authors.initials: P
authors.lastname: Confalonieri
authors.affiliation: 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.
authors.forename: Paola
authors.initials: P
authors.lastname: Mosconi
authors.affiliation: 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.
authors.forename: Irene
authors.initials: I
authors.lastname: Tramacere
mesh_terms: D000328:Adult; D000368:Aged; D001315:Australia; D003657:Decision Making; D005260:Female; D006801:Humans; D020407:Internet; D007558:Italy; D008297:Male; D008875:Middle Aged; D009103:Multiple Sclerosis / Q000188:drug therapy*; D020529:Multiple Sclerosis, Relapsing-Remitting / Q000188:drug therapy*; D010865:Pilot Projects; D011795:Surveys and Questionnaires; D055815:Young Adult