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Experience of an information aid for newly diagnosed multiple sclerosis patients: a qualitative study on the SIMS-Trial

  1. Claudia Borreani MSc1,
  2. Andrea Giordano MSc2,
  3. Monica Falautano MSc3,
  4. Alessandra Lugaresi MD4,
  5. Vittorio Martinelli MD5,
  6. Franco Granella MD6,
  7. Carla Tortorella MD7,
  8. Imma Plasmati MD7,
  9. Marta Radaelli MD5,
  10. Deborah Farina MD4,
  11. Eleonora Dalla Bella MD6,
  12. Elisabetta Bianchi MSc1,
  13. Nicola Acquarone MSc8,
  14. Guido Miccinesi MD9,
  15. Alessandra Solari MD2,
  16. on behalf of the SIMS-Trial group†

Article first published online: 1 NOV 2011

DOI: 10.1111/j.1369-7625.2011.00736.x

Additional Information

How to Cite

Borreani, C., Giordano, A., Falautano, M., Lugaresi, A., Martinelli, V., Granella, F., Tortorella, C., Plasmati, I., Radaelli, M., Farina, D., Bella, E. D., Bianchi, E., Acquarone, N., Miccinesi, G., Solari, A. and on behalf of the SIMS-Trial group (2011), Experience of an information aid for newly diagnosed multiple sclerosis patients: a qualitative study on the SIMS-Trial. Health Expectations. doi: 10.1111/j.1369-7625.2011.00736.x

Author Information

  1. 1

    Psychology Unit, National Cancer Institute Foundation, Milan

  2. 2

    Unit of Neuroepidemiology, Foundation IRCCS Neurological Institute C. Besta, Milan

  3. 3

    Deparment of Neurology, Psychology Unit, Scientific Institute Hospital San Raffaele, Milan

  4. 4

    Department of Neuroscience and Imaging, University “G. d’Annunzio” of Chieti-Pescara, Chieti

  5. 5

    Department of Neurology, Scientific Institute Hospital San Raffaele, Milan

  6. 6

    Department of Neurosciences, Neurology Unit, University of Parma, Parma

  7. 7

    Departments of Neurological and Psychiatric Sciences, University of Bari, Bari

  8. 8

    Department of Personnel and Innovation, Province of Genoa, Genoa

  9. 9

    Epidemiology Unit, Cancer Prevention and Research Institute (ISPO), Florence, Italy

  1. †

    Members of the SIMS-Trial group are listed in the Appendix S1.

*Alessandra Solari MD Neuroepidemiology Unit Foundation IRCCS Neurological Institute C. Besta Via Celoria 11 20133 Milan Italy E-mail: solari@istituto-besta.it

  1. †

    Members of the SIMS-Trial group are listed in the Appendix S1.

Publication History

  1. Article first published online: 1 NOV 2011
  2. Accepted for publication 8 September 2011

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Keywords:

  • complex intervention;
  • diagnosis communication;
  • multiple sclerosis;
  • qualitative study;
  • shared decision making

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.

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