Implementation of the 'Sapere Migliora' information aid for newly diagnosed people with multiple sclerosis in routine clinical practice: a late-phase controlled trial

Mult Scler. 2014 Aug;20(9):1234-43. doi: 10.1177/1352458513519180. Epub 2014 Jan 13.

Abstract

Background: The SIMS-Trial showed that the 'Sapere Migliora' information aid (IA) for newly diagnosed people with multiple sclerosis (PwMS) effectively improved patient knowledge and satisfaction with care.

Objectives: The objectives of this paper are to assess the effectiveness of the IA in clinical practice and to compare the whole IA with the take-home booklet/website component alone.

Methods: After updating the IA and replacing the CD with a website, a prospective, open-label non-randomised controlled trial compared the whole IA (group A, five SIMS-Trial centres) to take-home (group B, 16 centres). One month after the intervention, participants completed the MS Knowledge Questionnaire (MSKQ), care satisfaction questionnaire (COSM-R) (primary study outcomes), Hospital and Anxiety Depression Scale, and ad hoc questionnaire appraising the IA.

Results: We enrolled 159 newly diagnosed PwMS (May 2012-March 2013). Drop-outs were four of 77 (5%, group A) and 11/82 (13%, group B). Primary endpoint (highest tertile both for MSKQ and COSM-R section 2 scores) was achieved by 38/77 (49%) group A and 33/82 (40%) group B (p = 0.25). Attainment of secondary outcomes was also similar between groups.

Conclusions: This study shows that the entire IA is not superior to the booklet/website alone, and that both are comparable in efficacy to the intervention arm of the SIMS-Trial.

Trial registration number: ISRCTN78940214.

Keywords: Multiple sclerosis; clinical practice; complex health intervention; disease knowledge; information aid; patient satisfaction.

Publication types

  • Controlled Clinical Trial
  • Multicenter Study
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Adolescent
  • Adult
  • Comprehension
  • Female
  • Health Knowledge, Attitudes, Practice*
  • Health Literacy
  • Humans
  • Internet
  • Interviews as Topic
  • Italy
  • Male
  • Middle Aged
  • Multiple Sclerosis / diagnosis
  • Multiple Sclerosis / physiopathology
  • Multiple Sclerosis / psychology
  • Multiple Sclerosis / therapy*
  • Pamphlets
  • Patient Education as Topic / methods*
  • Patient Satisfaction
  • Prospective Studies
  • Surveys and Questionnaires
  • Treatment Outcome
  • Young Adult

Associated data

  • ISRCTN/ISRCTN78940214