EDITOR’S NOTE: In the first installment of this 4-part series, a general overview of the definition of cognitive impairment (CI) and a list of the most common signs were covered. In this follow-up column, MS columnist Anita Williams dives deeper into spotting the signs of cognitive impairment as early as possible.
For persons living with multiple sclerosis (MS), daily life consists of a host of challenges, and cognitive impairment (CI) is the primary one among them. As a quick review, the National Multiple Sclerosis Society (NMSS) identified common signs of cognitive dysfunctions as follows:
• Information processing (dealing with information gathered by the five senses)
• Memory (acquiring, retaining, and retrieving new information)
• Attention and concentration (particularly divided attention)
• Executive functions (planning and prioritizing)
• Visuospatial functions (visual perception and constructional abilities)
• Verbal fluency (word-finding)
As someone who lives with MS, I worry a great deal about cognitive impairment (CI). For me, it is the fear of losing a part of myself. My knowledge, my past, and my personality are all centered in my brain. This is the same brain that hosts lesions that can affect all parts of my body. The same brain that I use to write columns is the one that can take that ability away from me and maybe distort my perceptions of everything. Tracking changes is the best way to assuage those fears. Knowledge is power.
Read about the diagnosis of MS
Unfortunately, I do not have a baseline of cognitive abilities from which I can compare the past with the present. The early establishment of a cognitive baseline is crucial. CI progression cannot be charted without a starting point. If we had created that baseline immediately, my healthcare team and I could have a longer history from which to closely watch my cognitive functions.
Regardless of when it is started, the regular monitoring of MS symptoms, including areas affected by CI, is essential. One of the most crucial activities I can do is to track my own MS symptoms.
There is no shortage of tools to help people living with MS track symptoms. From manual tracking to digital helpers, there is a way to monitor changes and symptoms for just about everyone with MS. The type of tool is not as important as its consistent usage. This is an issue that should be discussed to determine what works best for the patient. Below is a list of non-exhaustive, general categories of available symptom-tracking tools:
• Manual logging: Notations in a diary or journal; Symptom Log; Spreadsheet (i.e., Microsoft Excel); National Multiple Sclerosis Society tracker templates;
• Online Trackers: MS One-to-One; iConquerMS™ online journal;
• Apps: My MS Buddy; My MS Manager™; MyTherapy; Aby™.
Regardless of the method, it is important for persons living with MS to keep an eye on symptoms and to make note of them as they happen. Healthcare professionals who work with MS patients should be keeping track of symptoms. Cognitive functioning is no different and needs to be diligently tracked.
When it comes to tracking tools, HCPs do not have options. They are relegated to using existing methods to create an initial assessment and as a way to track cognitive changes. With no definitive way to track CI, HCPs use what is available.
Accepted tools, such as the Brief International Cognitive Assessment for Multiple Sclerosis (BICAMS) and the Brief Repeatable Battery of Neuropsychological Tests (BRB), can also be used to diagnose and track CI. The Expanded Disability Status Scale (EDSS) is considered the gold standard for the assessment of neurological disability and progression in patients with MS.
In recent years, however, some limitations of the EDSS scale and other tracking tools have emerged, including significant inter-rater variability and underestimation of functional parameters, such as cognition, vision, and upper limb function, with changes in those parameters not always being reflected by the global EDSS score.
But there’s good news. The lack of useful CI testing tools is not being ignored. Currently, there are a few options in the pipeline. One is the MSProDiscussion™, which is in development. The MSProDiscussion™ is described as a tool that “… analyzes multidimensional data via an algorithm to estimate the likelihood of progression (the MSProDiscuss™ score), the contribution of various symptoms, and the impact of symptoms on daily living, enabling a more personalized approach to treatment and disease management.”
By taking a near 360-degree perspective on CI, instruments such as this can look at all facets of this issue and be better able to help those living with MS to monitor and track progress patterns.