Experience of an information aid for newly diagnosed multiple sclerosis patients

A qualitative study on the Sims‐Trial

Dados Bibliográficos

ID19506953
AutoresClaudia Borreani (0000-0002-7447-4626, Vita-Salute San Raffaele University), Andrea Giordano (0000-0002-6051-0067), Monica Falautano (0000-0002-7264-6324, San Raffaele University of Rome), Alessandra Lugaresi (0000-0003-2902-5589, University of Chieti-Pescara, autor correspondente), Vittorio Martinelli (0000-0002-5987-5739, San Raffaele University of Rome), Franco Granella (University of Parma), Carla Tortorella (0000-0001-9037-7300, University of Bari Aldo Moro), Imma Plasmati (University of Bari Aldo Moro), Marta Radaelli (0000-0003-1948-3498, San Raffaele University of Rome), Deborah Farina, Eleonora Dalla Bella (0000-0001-6267-9651, University of Parma), Elisabetta Bianchi (0000-0001-8085-3545, National Cancer Institute), Nicola Acquarone, Guido Miccinesi (0000-0002-7452-9594, Piedmont Reference Center for Epidemiology and Cancer Prevention), Alessandra Solari (0000-0001-9930-7579, autor correspondente)
Ano2014
Volume17
Fascículo1
Páginas36-48
Data de publicação2014-02-01
Peer ReviewedSim
Open AccessSim
TipoARTICLE
PeriódicoHealth Expectations (JOURNAL)
Identificadores do periódicoISSN: 1369-6513 • E-ISSN: 1369-7625
EditoraWiley (PUBLISHER • GB)
DOI10.1111/j.1369-7625.2011.00736.x
PMID22040528
OpenAlexW1492044580
IdiomaEN
Citações recebidas2
Referências citadas27

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

Family medicine · Focus group · Health care · Information needs · Medical education · Patient experience · Qualitative research · World Wide Web · Computer Science · Digital Mental Health Interventions · Health Literacy and Information Accessibility · Medicine · Multiple Sclerosis Research Studies · Nursing · Psychology