The importance of a multi-disciplinary perspective and patient activation programmes in MS management

Abstract

Background: Multiple sclerosis (MS) is a progressive disease associated with a large variety of symptoms and changing patients' needs during the disease course. In order to provide appropriate care in every disease stage and let patients live their lives to the full, a multi-disciplinary approach and patient activation is needed. Objective: To summarise the multi-disciplinary perspective of MS, with focus on the organisation of a multi-disciplinary care team and possibilities to support patient activation. Methods: This review reflects the content of the presentations, audience polling results and discussions on the multi-disciplinary perspective of MS during the second Pan-European MS Multi-stakeholder Colloquium. Results: In many countries, the neurologist with or without the support of an MS nurse is responsible for the long-term care of MS patients. When needed, they should refer to other (non-)medical specialists. However, the patient should be empowered as well to manage his/her disease and to implement a physically active lifestyle in order to improve treatment outcomes and quality of life. Conclusion: To create equal access to care for MS patients across Europe, evidence-based standards of care, symptom self-monitoring tools and educational programmes for patients and healthcare professionals including non-medical treatment strategies should be developed at the European level.

Conclusions: Calls to action for improving the life of MS patients and their families

“…At the second Colloquium, the working group for multi-disciplinary care and patient activation defined patient activation not only as 'Structured exercise to improve activity' but also as 'Behavioural lifestyle change to improve participation (in physical activity)'. 7 This should be supported because it seems that MS patients have less physical activity than healthy controls. 11 This working group also recommended to perform well-designed and powered phase III studies to increase the evidence on the impact of exercise/physical activity on outcomes such as walking, fatigue, ADL and QoL.…”

“…7 In addition, they continue with socialising, which has a positive impact on their mood/mental QoL. Therefore, people living with MS should be stimulated and supported with exerciserelated activities as this may reduce indirect costs and improve their mental health.…”

Living with Multiple Sclerosis in Europe: Pharmacological Treatments, Cost of Illness, and Health-Related Quality of Life Across Countries

“…Most of the studies adopted a multidisciplinary perspective of MS, with focus on the organization of a multidisciplinary care team and the possibility to support the patient, so that the latter is empowered to manage his or her disease and to implement a physically active lifestyle. Furthermore, some studies have emphasized how dedicated programs for patients and health care professionals, including nonmedical treatment strategies, should be developed at the European level (38).…”

Content and Delivery of Physical Therapy in Multiple Sclerosis across Europe: A Survey

“…As a consequence, MS continues to be a disabling neurological disease that affects people at the peak of their career and causes substantial health and social care burden. Therefore, comprehensive management including rehabilitation is urgently needed to manage the wide range of complex and interacting symptoms that people are confronted with in their daily lives [1].…”