Introduction: The IN-DEEP project aims to provide people with multiple sclerosis (PwMS) with evidence-based information on magnetic resonance imaging (MRI) in diagnosis and monitoring the disease through a website, and to collect their opinions on the clarity of the website’s contents and its usefulness. Methods and analysis: A multidisciplinary advisory board committee was set up. We investigated the experience, attitude and information needs on MRI through three meetings with 24 PwMS, facilitated by an expert researcher and an observer. We developed the website on the basis of input from PwMS and systematic reviews and guidelines, assessed with AMSTAR and AGREE II. We sought feedback from nine PwMS who pilot-tested the beta-version of the website, during a meeting and through phone interviews and judged whether the contents were clear, understandable and useful, and the website was easily navigable. The website is in Italian. Results: The website (https://www.istituto-besta.it/in-deep-risonanza-magnetica2) provides two levels of information, different layouts and visualization of data covering MRI diagnostic accuracy, sensitivity and specificity, contents on how MRI can monitor PwMS over time to determine changes in the condition and evaluate treatment effects, practical information on how to prepare for the exam, educational tools and a glossary. The website was judged clear and useful by a sample of PwMS. Conclusions: The website is a tool to address PwMS information needs on the role of MRI. It could be used by neurologists to facilitate communication with PwMS.
Colombo, C., Confalonieri, P., Rovaris, M., La Mantia, L., Galeazzi, P., Silena, T., et al. (2020). The IN-DEEP project “INtegrating and Deriving Evidence, Experiences, Preferences”: a web information model on magnetic resonance imaging for people with multiple sclerosis. JOURNAL OF NEUROLOGY, 267(8), 2421-2431 [10.1007/s00415-020-09864-7].
The IN-DEEP project “INtegrating and Deriving Evidence, Experiences, Preferences”: a web information model on magnetic resonance imaging for people with multiple sclerosis
De Stefano N.;
2020-01-01
Abstract
Introduction: The IN-DEEP project aims to provide people with multiple sclerosis (PwMS) with evidence-based information on magnetic resonance imaging (MRI) in diagnosis and monitoring the disease through a website, and to collect their opinions on the clarity of the website’s contents and its usefulness. Methods and analysis: A multidisciplinary advisory board committee was set up. We investigated the experience, attitude and information needs on MRI through three meetings with 24 PwMS, facilitated by an expert researcher and an observer. We developed the website on the basis of input from PwMS and systematic reviews and guidelines, assessed with AMSTAR and AGREE II. We sought feedback from nine PwMS who pilot-tested the beta-version of the website, during a meeting and through phone interviews and judged whether the contents were clear, understandable and useful, and the website was easily navigable. The website is in Italian. Results: The website (https://www.istituto-besta.it/in-deep-risonanza-magnetica2) provides two levels of information, different layouts and visualization of data covering MRI diagnostic accuracy, sensitivity and specificity, contents on how MRI can monitor PwMS over time to determine changes in the condition and evaluate treatment effects, practical information on how to prepare for the exam, educational tools and a glossary. The website was judged clear and useful by a sample of PwMS. Conclusions: The website is a tool to address PwMS information needs on the role of MRI. It could be used by neurologists to facilitate communication with PwMS.
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https://hdl.handle.net/11365/1123083
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