Making Shared Decisions about Disease Management Strategies

What is Shared Decision Making?

The process of making treatment decisions collaboratively with your healthcare providers is called “shared decision making.” In this process, you work with each of your providers to make decisions involving tests, medicines, treatment strategies, care plans, and goals. Participating together in the decision-making process helps to ensure that your care is based on clinical evidence and your provider’s knowledge (your provider’s area of expertise) and your priorities, values and preferences (your area of expertise).  

In this article we offer tips for effective shared decision making about your disease modifying therapy.  

Collaborative Decision Making Leads to Better Outcomes

Research has clearly shown that when people with MS partner with their MS care provider in deciding when to start treatment with a disease-modifying therapy (DMT), and which treatment to use, the outcomes are better: 

• Better adherence to treatments, which is associated with better outcomes 
• Better ability to manage side effects
• More satisfaction with their healthcare
• Improved communication with their healthcare team 

Some Tips to Help you Participate Effectively in this Conversation:

1. Gather as much information as you can about the available DMT’s. There are currently more than 20 approved medications, which means there’s a lot of information to think about. They work in different ways in the body and are administered in different ways and on different schedules.  
2. Think about your personal goals for taking a DMT. What are hoping the outcome(s) of treatment will be? For example, are you: 
   • Looking to slow the progression of your MS? 
   • Trying to reduce the number of relapses you have? 
   • Looking to invest in your future by doing something good for yourself today? 
   • Trying to do everything you can to manage your MS. 
3. Come prepared with a list of your questions:
   • How are the various medications taken? 
   • What are the possible side effects and risks?
   • What are the pros and cons of starting treatment now? 
   • What are the risks of not starting now? 
   • What are the differences between the high-efficacy options and the other options? 
   • What are the pros and cons of starting on a high-efficacy treatment? 
   • How will I know if the treatment is working for me? 
   • Will I be on the same treatment for the foreseeable future, or will my medication change over time? 
   • What are the costs likely to be? 
4. Give your MS care provider all the information they need to offer you the treatment option that is likely to work best for you at this time. 
   • If you are planning to start your family or add to the family you already have, let your provider know your plans. This information will impact your treatment options and the timing of your treatment, whether you are female or male. 
   • If you have strong feelings about the way the medication is administered, be sure to let your provider know that upfront. The medications are administered orally, by injection, or by infusion, so your preferences matter. The more comfortable you are with the method of delivery and the scheduling of the doses, the more consistent you are likely to be with your medication. 
   • If you have a work schedule that limits your options for time off or requires a lot of travel, it’s helpful for your provider to know that as well.
5. If you don’t understand what your MS care provider is explaining to you, say so. 
6. Bring your partner, family member, or friend to the appointment(s) to be another set of ears. 

Summary

We hope these tips will help you participate more comfortably and effectively in the shared decision-making process with your MS care provider. Combining their expertise with your personal goals, values, and priorities is the optimal way to make your treatment work for you.