Patient Involvement May Promote Positive Outcomes for People with MS
7th March 2018
A collaboration between healthcare professionals (HCPs) and people with multiple sclerosis (PwMS) could improve patient outcomes, according to a new paper “Unmet needs, burden of treatment, and patient engagement in multiple sclerosis: a combined perspective from the MS in the 21st Century Steering Group” published in the peer reviewed journal, Multiple Sclerosis and Related Disorders.
The paper – written by a newly formed MS in the 21st Century Steering Group consisting of 14 HCPs and 11 PwMS – set out to foster collaboration and explore differences in the way HCPs and PwMS define and prioritise areas of unmet needs in MS. The aims of the study were to: identify the similarities and discrepancies in the perception and prioritisation of three key areas in patient care (unmet needs, the treatment burden in MS, and factors that impact patients engagement); and to provide practical advice on how the gaps in perception and understanding in these key areas could be bridged.
To achieve this, the HCP and PwMS participants of this joint Steering Group attended a series of separate but concurrent open-forum workshops to discuss these key issues. The aim of these parallel workshops was for each group to identify the key issues from their perspective for each of the three discussion topics. The groups were asked to prioritise their results for each of the three topics in terms of the perceived importance to the improvement of care and patient outcomes. A subsequent joint workshop, attended by both groups, shared and discussed disparities and similarities in the results.
The following eight actions were highlighted in the workshops:
- Improve communication to raise the quality of HCP-patient interaction and optimise the limited time available for consultations.
- Heighten the awareness of ‘hidden’ disease symptoms and how these can be managed.
- Improve the dialogue surrounding the benefit versus risk issues of therapies to help patients become fully informed and active participants in their healthcare decisions.
- Provide accurate, lucid information in an easily accessible format from reliable sources.
- Encourage HCPs and multidisciplinary teams to acquire and share new knowledge and information among their teams and with PwMS.
- Foster greater understanding and awareness of challenges faced by PwMS and HCPs in treating MS.
- Collaborate to develop local education, communication and patient-engagement initiatives.
- Motivate PwMS to become advocates for self-management in MS care.
These practical recommendations will help bridge the gaps in the perception of unmet needs, treatment burden, and patient engagement between HCPs and PwMS, consequently improving patient care. More importantly, the study highlights the importance of increased patient engagement, shared decision-making and communication between HCPs and PwMS, in order to achieve more effective and personalised care.