Article Text

Download PDFPDF
050 Shared decision making and the use of outcome- information in routine care management for people with multiple sclerosis
  1. Olga C Damman1,
  2. Laxsini Murugesu1,
  3. Vincent DE Groot2,3,
  4. Brigit De Jong3
  1. 1Department of Public and Occupational Health and Amsterdam Public Health research institute, Quality of Care, Amsterdam UMC location Vrije Universiteit Amsterdam, Amsterdam, the Netherlands
  2. 2Department of Rehabilitation Medicine, Amsterdam UMC location Vrije Universiteit Amsterdam, Amsterdam, The Netherlands
  3. 3Department of Neurology, MS Center Amsterdam and Amsterdam Neuroscience, Amsterdam UMC location Vrije Universiteit Amsterdam, Amsterdam, The Netherlands


Introduction In care management of chronic disabling diseases such as multiple sclerosis (MS), Shared Decision Making (SDM) is increasingly advocated. We aimed to investigate how SDM and the use of different (novel) types of outcome-information therein is being applied in routine care management for people with MS in an academic outpatient clinic.

This qualitative study used (a) observations of clinical encounters (N=23) between patients and healthcare professionals (HCPs); (b) interviews with those patients (N=17); (c) interviews with those HCPs (N=7). HCPs were not trained in SDM prior to the study. Audio-recordings were transcribed literally. Transcriptions were analyzed using qualitative thematic analysis.

Results Outcome-information was hardly discussed with patients, apart from clinical outcome- information at an individual level, such as MRI results or lab results. This use of clinical outcome- information did not automatically lead to a process of SDM. HCPs tended to implicitly present choice to patients. In the interviews, patients indicated that they tended to consent with advices given by HCPs and to prefer not too much change in treatment plans. However, they also emphasized the importance of being informed about available options with benefits and harms. We did observe multiple elements of ‘preference/choice talk’, especially related to patients’ experiences and priorities.

Discussion The fact that HCPs focused more on patients’ experiences and priorities than on the options available may be related to the specific MS setting and the type of consultations observed. In training HCPs, it seems worthwhile to relate their current routine in ‘preference/choice talk’ explicitly to raising choice awareness, supported by outcome-information.

Conclusions Overall, SDM and the use of more novel types of outcome-information did not seem to be enacted in routine care management for people with MS, mostly because no explicit choice awareness was created. Training HCPs and developing patient information seem reasonable steps to proceed.

Statistics from

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.