Cinzia Colombo1, Paolo Confalonieri2, Marco Rovaris3, Loredana La Mantia3, Paolo Galeazzi4, Anita Pariani4, Simonetta Gerevini5, Nicola De Stefano6, Roberta Guglielmino7, Cinzia Caserta8, Paola Mosconi9, Graziella Filippini10. 1. Laboratory of Research and Consumer Involvement, Department of Public Health, Istituto Di Ricerche Farmacologiche Mario Negri IRCCS, Via Mario Negri 2, 20156, Milan, Italy. cinzia.colombo@marionegri.it. 2. Multiple Sclerosis Centre, Unit of Neuroimmunology and Neuromuscular Diseases, Fondazione IRCCS, Istituto Neurologico Carlo Besta, via Celoria 11, 20133, Milan, Italy. 3. IRCCS Don C. Gnocchi Foundation ONLUS, Via Capecelatro 66, 20148, Milan, Italy. 4. Lay Member of the Advisory Board, Milan, Italy. 5. Unit of Neuroradiology, IRCCS San Raffaele Scientific Institute, Milan, Italy. 6. Department of Medicine, Surgery, and Neurosciences, University of Siena, Siena, Italy. 7. Scientific Research Area, Italian Multiple Sclerosis Foundation (FISM), Via Operai 40, 16149, Genoa, Italy. 8. Multiple Sclerosis Center, Policlinico G. Rodolico, University of Catania, Catania, Italy. 9. Laboratory of Research and Consumer Involvement, Department of Public Health, Istituto Di Ricerche Farmacologiche Mario Negri IRCCS, Via Mario Negri 2, 20156, Milan, Italy. 10. Scientific Direction, Carlo Besta Foundation and Neurological Institute, via Celoria 11, 20133, Milan, Italy.
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.
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.
Entities:
Keywords:
Health information needs; Magnetic resonance imaging; Multiple sclerosis; Online health information; Patient involvement