Experience of an information aid for newly diagnosed multiple sclerosis patients

A qualitative study on the SIMS-Trial

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

Research output: Contribution to journalArticle

10 Citations (Scopus)

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. 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.

Original languageEnglish
Pages (from-to)36-48
Number of pages13
JournalHealth Expectations
Volume17
Issue number1
DOIs
Publication statusPublished - Mar 2014

Fingerprint

Multiple Sclerosis
Interviews
Pamphlets
Group Processes
Focus Groups
Physicians
Chronic Progressive Multiple Sclerosis
Patient Care
Neurologists

Keywords

  • Complex intervention
  • Diagnosis communication
  • Multiple sclerosis
  • Qualitative study
  • Shared decision making

ASJC Scopus subject areas

  • Public Health, Environmental and Occupational Health
  • Medicine(all)

Cite this

Experience of an information aid for newly diagnosed multiple sclerosis patients : A qualitative study on the SIMS-Trial. / Borreani, Claudia; Giordano, Andrea; Falautano, Monica; Lugaresi, Alessandra; Martinelli, Vittorio; Granella, Franco; Tortorella, Carla; Plasmati, Imma; Radaelli, Marta; Farina, Deborah; Dalla Bella, Eleonora; Bianchi, Elisabetta; Acquarone, Nicola; Miccinesi, Guido; Solari, Alessandra.

In: Health Expectations, Vol. 17, No. 1, 03.2014, p. 36-48.

Research output: Contribution to journalArticle

Borreani, C, Giordano, A, Falautano, M, Lugaresi, A, Martinelli, V, Granella, F, Tortorella, C, Plasmati, I, Radaelli, M, Farina, D, Dalla Bella, E, Bianchi, E, Acquarone, N, Miccinesi, G & Solari, A 2014, 'Experience of an information aid for newly diagnosed multiple sclerosis patients: A qualitative study on the SIMS-Trial', Health Expectations, vol. 17, no. 1, pp. 36-48. https://doi.org/10.1111/j.1369-7625.2011.00736.x
Borreani, Claudia ; Giordano, Andrea ; Falautano, Monica ; Lugaresi, Alessandra ; Martinelli, Vittorio ; Granella, Franco ; Tortorella, Carla ; Plasmati, Imma ; Radaelli, Marta ; Farina, Deborah ; Dalla Bella, Eleonora ; Bianchi, Elisabetta ; Acquarone, Nicola ; Miccinesi, Guido ; Solari, Alessandra. / Experience of an information aid for newly diagnosed multiple sclerosis patients : A qualitative study on the SIMS-Trial. In: Health Expectations. 2014 ; Vol. 17, No. 1. pp. 36-48.
@article{526067aba92d49f9a13e562bb67bae5b,
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. 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.",
keywords = "Complex intervention, Diagnosis communication, Multiple sclerosis, Qualitative study, Shared decision making",
author = "Claudia Borreani and Andrea Giordano and Monica Falautano and Alessandra Lugaresi and Vittorio Martinelli and Franco Granella and Carla Tortorella and Imma Plasmati and Marta Radaelli and Deborah Farina and {Dalla Bella}, Eleonora and Elisabetta Bianchi and Nicola Acquarone and Guido Miccinesi and Alessandra Solari",
year = "2014",
month = "3",
doi = "10.1111/j.1369-7625.2011.00736.x",
language = "English",
volume = "17",
pages = "36--48",
journal = "Health Expectations",
issn = "1369-6513",
publisher = "Wiley-Blackwell",
number = "1",

}

TY - JOUR

T1 - Experience of an information aid for newly diagnosed multiple sclerosis patients

T2 - A qualitative study on the SIMS-Trial

AU - Borreani, Claudia

AU - Giordano, Andrea

AU - Falautano, Monica

AU - Lugaresi, Alessandra

AU - Martinelli, Vittorio

AU - Granella, Franco

AU - Tortorella, Carla

AU - Plasmati, Imma

AU - Radaelli, Marta

AU - Farina, Deborah

AU - Dalla Bella, Eleonora

AU - Bianchi, Elisabetta

AU - Acquarone, Nicola

AU - Miccinesi, Guido

AU - Solari, Alessandra

PY - 2014/3

Y1 - 2014/3

N2 - 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.

AB - 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.

KW - Complex intervention

KW - Diagnosis communication

KW - Multiple sclerosis

KW - Qualitative study

KW - Shared decision making

UR - http://www.scopus.com/inward/record.url?scp=84892447355&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84892447355&partnerID=8YFLogxK

U2 - 10.1111/j.1369-7625.2011.00736.x

DO - 10.1111/j.1369-7625.2011.00736.x

M3 - Article

VL - 17

SP - 36

EP - 48

JO - Health Expectations

JF - Health Expectations

SN - 1369-6513

IS - 1

ER -