Making Shared Decisions about Symptom Management Strategies

Introduction

Comprehensive MS care attends to many aspects of your health and well-being. Participating together with your healthcare providers in decisions about how best to manage your symptoms helps to ensure that treatment decisions are 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).  

Managing MS symptoms is a full-time effort that, over time, may involve several members of the healthcare team. Symptoms may appear and disappear and change over time, with some having a greater impact than others on your daily life. Together, you and your providers will identify and implement management strategies to optimize your comfort, independence, and productivity.  

Some Tips for Working Collaboratively with your Team to Manage your Symptoms:

1. While some of your symptoms will be obvious to your MS care provider from what they can see or from the tests they perform, others will not (for example, your fatigue, pain level, mood, cognitive challenges, bladder and bowel symptoms). Your provider has no idea which symptom(s) are causing you the most difficulty or discomfort, or have the greatest impact on your quality of life, unless you tell them. So, keep track of your symptoms between visits, and bring a prioritized list of the one(s) that you want to be sure to discuss. For example:

1. 1. • Sleep difficulties, including difficulty falling asleep or staying asleep, disrupted sleep due to pain, spasms, trips to the bathroom, anxiety, or any other cause. 
      • Fatigue that interferes with your daily activities and quality of life.
      • Pain that interferes with daily activities. Since MS can cause many different kinds of pain, it’s important to let your MS care provider where the pain is located, what, if anything, seems to trigger it, how severe it is, and what, if anything, you are currently doing seems to make it better. 
      • Mood changes, including feeling down or blue much of the time; feeling stressed or anxious to the degree that it interferes with your sleep or activities; uncontrolled episodes of laughing or crying; or any other mood changes that are making you uncomfortable or impacting your relationships 
      • Changes in your thinking or memory that are interfering with your activities at work or at home. Examples might include forgetting tasks, appointments, book or movie story lines, being unable to keep up with conversations, difficulty planning and prioritizing tasks, inability to come up with words during conversations, or getting lost in familiar places.
2. If there isn’t enough time in your visit to discuss the symptoms that are most bothersome to you, be sure to ask for another appointment to continue the conversation. Some topics may require their own appointments just to make sure you and your provider can address them thoroughly.  
3. Ask which type of healthcare provider can best assist you (the MS care provider, a rehab professional, a mental health professional, a cognition specialist, or someone else). And then ask for referrals to the appropriate team members. 
4. Ask your providers to communicate with one another about your care. If that doesn’t happen, take responsibility to sharing updates with your MS care provider on your symptom management strategies. 
5. When working with a rehabilitation professional, make sure they know your goals for physical activity and exercise, your challenges with household, work, and recreational activities, and any issues you have having with pain. In turn, they will offer exercises, tools, adaptive equipment, and environmental modifications that allow you to do the things that are important to you, while staying safe and comfortable. 
6. If any of your providers talk too fast, used vocabulary you don’t understand, or don’t fully answer your questions, be sure to ask them to speak slower, write things down for you, repeat them, or give your reading material on the subject. If you don’t understand what your provider is saying, you can’t participate fully in shared decision-making.   

Summary

We hope these tips will help you participate more comfortably and effectively in the shared decision-making process with the healthcare providers who are helping you manage your symptoms. Combining their expertise with your personal goals, values, and priorities is the optimal way to make your treatment work for you.