Consensus on Optimal Multiple Sclerosis Injectable Treatment Management to Improve Patient Adherence: The MS Delphi Project

Background: Treatment adherence among multiple sclerosis (MS) patients is low and treatment discontinuation could be associated with increased healthcare costs and need for high-risk escalation therapies. Such patient behavior may be influenced by differences in how information on interferon β or glatiramer acetate treatments (injectables) is provided. Currently there is no consensus or guidelines on how information is shared, including guidance on how patients with MS should act when experiencing disease symptoms or side effects associated with injectable treatments. 

Objectives: To achieve a consensus on how to inform MS patients about flu-like symptoms (FLS), injection-site reactions (ISRs), fatigue, anxiety, depression and cognitive problems, and how to manage these side effects, with the eventual goal of developing and implementing guidelines for MS nurses in the Netherlands. 

Methods:  To reach this consensus, the Delphi methodology was used. First, a total of 25 propositions on adherence and FLS, ISRs, fatigue, anxiety, depression and cognitive problems were included in a survey to assess the current opinion of a representative sample of 25 Dutch MS nurses or nurse practitioners. The results of the first round were used to determine whether a consensus was present, and would imply whether a guideline on how to deal with these issues would be valuable. Two more survey rounds with alternative or modified propositions were used to gain more detail on these topics. Comprehensive evidence-based background information was compiled and sent to participants prior to the third round. 

Results: The responses to the three survey rounds and the background information will be used to determine what could be done to optimize treatment adherence, and to develop a guideline. An overview of responses from the three survey rounds will be presented at the congress. An optimal approach to treatment adherence, medical education, clinician support, and caregiver and family education and support will ultimately lead to improved outcomes. This guideline will be part of the continuous medical education of specialized MS nurses in the Netherlands.

Conclusions: The information and guideline resulting from this Dutch initiative will be shared with the international community, since treatment adherence and information on how to manage FLS, ISRs, fatigue, anxiety, depression and cognitive problems are global issues and the information might also be beneficial to MS patients globally.