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Editor’s Note: This is the third in a 4-part series by multiple sclerosis (MS) columnist Anita Williams exploring cognitive issues associated with MS that she feels do not get the attention they deserve.

Cognitive impairment (CI) is not a given for every person living with multiple sclerosis (MS). But it is a concern. With an estimated 50% of people with MS affected by CI, the numbers are great enough that it is an issue worth addressing.

Like gait disturbances or arm drops, it is only natural that a healthcare provider (HCP) broach this in discussions with their patient. The difference is that this is a sensitive topic that has the potential to offend or hurt patients with MS. However, if the approach is done with a collaborative effort in mind, that potential roadblock can become the foundation for understanding and tracking another MS symptom.

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If the discussion around CI has not taken place previously, in any form or fashion, getting started might feel uncomfortable. Hopefully, the HCP has already established a good, collaborative relationship with the patient. If not, this is a good time to understand the concept of reading the room. Choosing an appropriate time to bring up CI sets the tone. Should this be an issue of apparent decline, then the appropriate time is now. Otherwise, pick an appointment that is not already slated to discuss any news that is not positive. The last thing a person living with MS needs is a pile-on.

Discussing CI should be talked about in the same way the HCP would discuss any other symptom. To be overly dramatic or concerned in one’s delivery sets the stage for fear, resistance, or denial. This is a subject where the HCP needs a patient with an open mind. Whatever the actual language used, the ultimate result of the conversation should be to explain CI and figure out how to establish a baseline. Emphasize that this is not a psychological or psychiatric determination. Frame this as an opportunity for a collaborative effort at maintaining the overall health of the person living with MS.

The obvious first step in tracking CI is establishing a baseline. This foundation is the starting point for the person living with MS and their HCP. It is from here that over time they will determine whether there seems to be measurable CI. This is the first chance to begin the aforementioned collaborative work. Deciding how to measure CI can work in 2 ways. One is to work from a shared tool, and the other is for each partner to work with their specific tools. 

In the first model, the HCP and the patient with MS look at all the tools available to both parties. Through comparison and contrast, they can decide on one single tool that will be used to track CI. This could mean keeping track by utilizing the self-reported information from the patient with MS. Inversely, the decision could be made to rely on the tools used by MS HCPs. In either case, there is a singular tool used for tracking CI.

The second model involves each party using one of the tools recommended for their position. The patient would track CI using tools specifically developed for patients with MS. The HCP would also use tools specifically developed for the healthcare industry. During their time tracking CI, the HCP and person living with MS would each bring their respective data to the table. The collaborative discussion would take into account both sets of data. From there, the parties can see if there is a consistency between the 2 sets of information. Each method has its pros and cons. This, like everything else, requires working together as healthcare partners.

Tracking CI in a person living with MS needs a foundation and a timetable. The timetable is simply an agreement on how often CI will be measured. Best practices would dictate that this measurement comes at regularly scheduled intervals. Appointments are the most convenient and obvious choice for communicating CI information. If those are scheduled regularly, it is an easy choice. A few minutes set aside to review data may be all it takes.

The alternative is to schedule a separate timetable for CI check-ins. If telehealth is available, this would be a great opportunity to use this option rather than an in-person appointment, which is preferred by both patients with MS and their HCPs. How the timetable is chosen and how the visit occurs is not as important as consistency. Adhering to a regular schedule is essential in tracking CI. If CI is happening, a haphazard approach only ensures that there will be confusion over when it seems to have started and the pace at which it is occurring.

The discussion surrounding CI does not end with broaching the subject and setting a baseline. The person living with MS is not powerless over CI, and their HCP has a role to play in that empowerment. There is much to talk about when it comes to protecting brain health and what the future holds.