February 14, 2023 | News | Living with MS MS Research MS Symptoms MS Treatments

Shared decision-making: how do you choose a treatment for multiple sclerosis?

Part 2 of 2

Learn about MS
Questions to ask your team
Sharing information about your treatment

When dealing with your healthcare team, the preferred approach is shared decision-making (SDM) (see Part 1). According to this model, decisions about your health should try to accommodate your personal circumstances, preferences and concerns. This approach is especially important when it comes to selecting a disease-modifying therapy (DMT) for your MS. No one wants you to feel your doctor has talked you into something you are unsure about. Instead, the goal is for the team – which includes you – to come up with the best solution for your situation.

Learn about MS
The first step is to educate yourself about MS so you understand what is happening to your body. Secondly, learn about the many medications available to treat your MS. This can feel overwhelming at first, but your MS team can address your questions and provide you with background reading. You may feel that this information does not fully meet your needs (Kuusisto and colleagues. Stud Health Technol Inform 2022;295:179-182). So you may also find it helpful to talk to other people with MS, and to access the many resources available online (including the Essentials library of publications at MSology at https://msology.ca/ms-essentials).

During this learning phase, it is helpful to jot down questions you want to ask your neurologist or MS nurse. If their answers prompt more questions – ask away. It is important that you feel you have what you need to make an informed decision when the time comes to choose a therapy.

Questions to ask your team
Next, you will want to have a discussion with your doctor and MS nurse about your unique circumstances. Some questions you may want to discuss with your doctor are:

• What can treatment do for my MS (and what do you want it to do)?

• What are the possible side effects? What side effects can you live with, and which ones do you absolutely want to avoid?

• Can I take this medication if I become pregnant? And is it safe to interrupt my treatment regimen if I want to breastfeed? For men, will treatment affect my fertility?

• What is my preferred way of taking a medication (e.g. an injection, a pill, or an infusion at a clinic)?

• Will treatment be inconvenient for my lifestyle (e.g. how often you need to take it, if you need to have it administered at a clinic rather than taking it at home)?

These (and other) questions will help you whittle down the treatment options to a more manageable number. You and your MS team can then discuss specific medications in greater depth. The goal is for you to be comfortable with the decision you ultimately make.

It may seem that the most important part of shared decision-making is ‘decision’, but it is really the ‘shared’ part. It begins with your neurologist and MS nurse sharing what they know about your MS (based on a neurological exam, blood tests and MRI). Equally important is what you share about your MS, such as your symptoms, odd sensations, effects on your energy level, and changes in mood or thinking ability.

The treatment discussion continues this sharing. Your MS team explains the pros and cons of the various treatments, and you share what is important to you.

Sharing information about your treatment
And the process does not stop there. Once you have decided on a medication, it is important to keep sharing your treatment experience with your MS team. Maybe you have side effects that you had not expected, or the side effects you anticipated become a real burden. Share that information with the MS team. If you still have relapses or other symptoms despite taking the medication – you will need to share that too. And your doctor will also share with you if he/she feels that the medication is not adequately controlling your MS.

If you and your doctor decide that your medication is not the best option, it does not mean that the initial decision was the wrong one. No one has failed. You made the best decision based on the information available at that time. But as new information becomes available – your experience as you take the drug – you and your MS team will need to periodically revisit the decision to ensure that this medication is still your best option.

During the course of MS, many people do change medications for a variety of reasons. Some people decide that the side effects are intolerable. Some continue to have relapses or other symptoms. Or a person’s life circumstances change, and they want to try something else – it is not uncommon that a decision made as a young adult needs to be updated as you get older.

Shared decision-making does not apply only to the disease-modifying therapies you take to control your MS. It will also come into play when discussing medications to treat MS symptoms (such as fatigue or muscle stiffness) or other issues (such as depression or anxiety). Your MS team will also need your input when discussing other interventions (such as physical or cognitive rehabilitation) and lifestyle changes (such as diet, exercise, smoking cessation and stress relief) that can help in your day-to-day life.

Your MS team provides you with expertise about the medical aspects of your illness and the treatment options that are available to you. But that knowledge will always be incomplete without your contribution. You are the expert on the lived experience of having MS, so your team needs to know about your all-too-real ‘invisible symptoms’ (such as fatigue, depression or cognitive problems) and their impact on your daily life. And you are the one who will be taking the medications, so your team needs to view your treatment within the larger context of your life: your lifestyle, your worries and concerns, and your hopes for the future. It is that sharing that will improve the decision-making when decisions need to be made.

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