| Experience of an information aid for newly diagnosed multiple sclerosis patients: a qualitative study on the SIMS-Trial. | |
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MedLine Citation:
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PMID: 22040528 Owner: NLM Status: Publisher |
Abstract/OtherAbstract:
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Background The SIMS-Trial (ISRCTN81072971) proved the effectiveness, in terms of patient's knowledge and care satisfaction, of an add-on information aid (personal interview with a physician using a navigable CD and take-home booklet) in 120 newly diagnosed patients with multiple sclerosis (MS) from five Italian centres. Objective To scrutinize the experience of SIMS-Trial participants in order to gain better understanding of the effectiveness of the information aid and its components. Design We performed (i) nine individual semi-structured interviews with a purposeful sample of SIMS-Trial patients who received the information aid, (ii) focus group meeting (FGM) with the physicians who conducted the personal interview, and (iii) FGM with patients' caring neurologists. Results Patients' experience with the information aid was positive as it enhanced their understanding of their disease, being viewed as a guided tour of their medical condition. The physicians who conducted the personal interviews were also positive in their overall evaluation but noted an initial difficulty in using the CD. The caring neurologists had limited direct experience of the aid, and their views were confined to utility of the information aid in general. All participants considered the combination of personal interview, CD navigation and take-home booklet essential, but urged a more flexible scheduling of the personal interview. It also emerged that some content required revision and that the aid was unsuitable for patients with primary progressive MS. Conclusions The results of the study further support the value of the aid and also provide important indications for improving it and refining indications for use. |
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Authors:
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Claudia Borreani; Andrea Giordano; Monica Falautano; Alessandra Lugaresi; Vittorio Martinelli; Franco Granella; Carla Tortorella; Imma Plasmati; Marta Radaelli; Deborah Farina; Eleonora Dalla Bella; Elisabetta Bianchi; Nicola Acquarone; Guido Miccinesi; Alessandra Solari; |
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Publication Detail:
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Type: JOURNAL ARTICLE Date: 2011-11-1 |
Journal Detail:
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Title: Health expectations : an international journal of public participation in health care and health policy Volume: - ISSN: 1369-7625 ISO Abbreviation: - Publication Date: 2011 Nov |
Date Detail:
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Created Date: 2011-11-1 Completed Date: - Revised Date: - |
Medline Journal Info:
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Nlm Unique ID: 9815926 Medline TA: Health Expect Country: - |
Other Details:
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Languages: ENG Pagination: - Citation Subset: - |
Copyright Information:
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© 2011 Blackwell Publishing Ltd. |
Affiliation:
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Psychology Unit, National Cancer Institute Foundation, Milan Unit of Neuroepidemiology, Foundation IRCCS Neurological Institute C. Besta, Milan Deparment of Neurology, Psychology Unit, Scientific Institute Hospital San Raffaele, Milan Department of Neuroscience and Imaging, University "G. d'Annunzio" of Chieti-Pescara, Chieti Department of Neurology, Scientific Institute Hospital San Raffaele, Milan Department of Neurosciences, Neurology Unit, University of Parma, Parma Departments of Neurological and Psychiatric Sciences, University of Bari, Bari Department of Personnel and Innovation, Province of Genoa, Genoa Epidemiology Unit, Cancer Prevention and Research Institute (ISPO), Florence, Italy. |
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