title: Experience of an information aid for newly diagnosed multiple sclerosis patients: a qualitative study on the SIMS-Trial.
abstract: 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.
  
  
  METHODS
  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.
authors: Psychology Unit, National Cancer Institute Foundation, MilanUnit of Neuroepidemiology, Foundation IRCCS Neurological Institute C. Besta, MilanDeparment of Neurology, Psychology Unit, Scientific Institute Hospital San Raffaele, MilanDepartment of Neuroscience and Imaging, University "G. d'Annunzio" of Chieti-Pescara, ChietiDepartment of Neurology, Scientific Institute Hospital San Raffaele, MilanDepartment of Neurosciences, Neurology Unit, University of Parma, ParmaDepartments of Neurological and Psychiatric Sciences, University of Bari, BariDepartment of Personnel and Innovation, Province of Genoa, GenoaEpidemiology Unit, Cancer Prevention and Research Institute (ISPO), Florence, Italy.
authors: Claudia
authors: C
authors: Borreani
authors: Andrea
authors: A
authors: Giordano
authors: Monica
authors: M
authors: Falautano
authors: Alessandra
authors: A
authors: Lugaresi
authors: Vittorio
authors: V
authors: Martinelli
authors: Franco
authors: F
authors: Granella
authors: Carla
authors: C
authors: Tortorella
authors: Imma
authors: I
authors: Plasmati
authors: Marta
authors: M
authors: Radaelli
authors: Deborah
authors: D
authors: Farina
authors: Eleonora
authors: E
authors: Dalla Bella
authors: Elisabetta
authors: E
authors: Bianchi
authors: Nicola
authors: N
authors: Acquarone
authors: Guido
authors: G
authors: Miccinesi
authors: Alessandra
authors: A
authors: Solari
mesh_terms: D000328:Adult; D002986:Clinical Trials as Topic; D005260:Female; D006801:Humans; D008297:Male; D008875:Middle Aged; D009103:Multiple Sclerosis / Q000628:therapy*; D010353:Patient Education as Topic / Q000379:methods*; D010361:Patients / Q000523:psychology*; D010820:Physicians / Q000523:psychology*; D036301:Qualitative Research; D013997:Time Factors