Patient Engagement in Multiple Sclerosis Treatment Management

Published Online:October 03, 2013
During a Merck Serono-sponsored satellite symposium at the 29th Annual European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS) conference, presenters shared research regarding patient engagement in treatment management for multiple sclerosis (MS). The presentation focused primarily on the relationship between patients with MS (PwMS) and their treating physicians. Examining the chief concerns of both groups, discussion supported a more balanced decision-making process with PwMS disclosing their own concerns and opinions about treatment options, and physicians being more aware of their patients’ desires and general lack of knowledge when it comes to MS.

Presenting at the symposium were Dr Mark S. Freedman, senior scientist, neuroscience, Ottawa Hospital Research Institute; professor of medicine, University of Ottawa; director, Multiple Sclerosis Research Unit, The Ottawa Hospital-General Campus; Dr Anthony Feinstein, associate scientist, physical sciences, Brain Sciences Research Program, Sunnybrook research institute; director, Neuropsychiatry Program, Sunnybrook Health Sciences Centre; professor, Department of Psychiatry, University of Toronto; and Alessandra Lugaresi, PhD, University of Chieti-Pescara.

Dr Freedman began the presentation with a discussion on the key goals of MS treatment which he outlined as: initiating with the most agent appropriate to the “window of presentation;” determining early the possibility of suboptimal response to treatment; effectively modifying treatment to address issues in efficacy, tolerability, and adherence based upon current models like the Canadian Treatment Optimization Model and the Modified Rio Score; and correctly switching or escalating therapies based upon a patient’s level of disease and adherence.  Freedman stressed the importance of balancing safety and efficacy throughout this discussion.

The topic of discussion then shifted to the lack of patient engagement in current MS treatment decision-making with both Dr Feinstein and Prof Lugaresi highlighting the importance of communication between physicians and PwMS, differences in physician and patient responses to MS topics, and the imbalance of clinical knowledge between both groups.

To reveal the current state of communication between physicians and PwMS, Feinstein cited the results of the Profile Project1 which found that while 79% of neurologists find their communication at the point of MS diagnosis to be satisfactory, only 14% say they have been able to manage all of their patients’ needs and expectations. Further, the miscommunication between physicians and PwMS is often perpetuated by differences in quality-of-life perception. Another survey, the MS Choices Survey2, revealed that when making treatment decisions, physicians are primarily concerned with physical symptoms, while PwMS are more concered with the overall effect on their lifestyle3.

What these problems call for, according to both Dr Feinstein and Prof Lugaresi, is a stronger effort on the part of physicians to encourage patient engagement and, perhaps more importantly, to ensure that PwMS understand the nature of the current state of their disease and both the safety and efficacy of treatment options. For the latter concern, Feinstein pointed out the widespread cognitive dysfunction among PwMS, and that because of this dysfunction, physicians should take “informants” (individuals who attend appointments with PwMS) more seriously, and exercise the same diligence when discussing MS topics. All presenters agreed that more active patient engagement will lead to more consistent adherence to MS treatments, which would then engender better outcomes.
1. Martinelli V et al. Disclosing the diagnosis of multiple sclerosis: the Profile Project. J Neurol. 2012;259(12):2605-2610. Accessed October 2, 2013.

2. Riñon et al. The MS Choices Survey: findings of a study assessing physician and patient perspectives on living with and managing multiple sclerosis. Patient Prefer Adherence. 2011;5:629-643. Accessed October 2, 2013.

3. Lugaresi A et al. Improving patient-physician dialog: commentary on the results of the MS Choices Survey. Patient Prefer Adherence. 2012;6:143-52. Accessed October 2, 2013.