Natural history of multiple sclerosis symptoms

Abstract

The North American Research Committee on Multiple Sclerosis (NARCOMS) Registry is a database that contains information from over 35,000 patient volunteers on symptom severity in 11 domains commonly affected in multiple sclerosis (MS): mobility, hand function, vision, fatigue, cognition, bowel/bladder function, sensory, spasticity, pain, depression, and tremor/coordination. The Registry affords a unique opportunity to study the frequency and severity of domain-specific impairment in a contemporary, mostly treated MS cohort over the course of the disease. The objective of this work was to calculate symptom prevalence in each of the 11 domains for years 0 to 30 from symptom onset. The resulting "symptom prevalence tables" demonstrate that a majority of participants perceive at least some degree of impairment in most domains as early as the first year of disease. The severity of impairment increases with disease duration across all domains, but the patterns of disability accumulation differ. The symptom prevalence tables illustrate the magnitude of perceived impact of the disease and highlight the extent of unmet need in symptomatic management. The tables are easy to use and allow MS patients and their clinicians to compare an individual's own impairment in any of the 11 domains to that of NARCOMS participants with the same disease duration.

Figures 1–11.

Symptom prevalence tables In the key, the color code shows the correspondence of various colors with grades on the Performance Scale (PS) for that domain. A symptom prevalence table is used as follows: Consider a hypothetical patient who has had the disease for 15 years and rates his or her fatigue level as “severe” (PS grade 4: “Every day, fatigue forces me to modify my daily activities; I am always tired”). To understand how this patient's fatigue compares to that of NARCOMS registrants with the same disease duration, we examine the boundaries of the light-blue segment that corresponds to PS = 4 on the stripe representing 15 years on Figure 4. The inner boundary of 65% means that a lesser degree of fatigue (PS ≤3) was reported by 65% of the NARCOMS registrants after 15 years of disease; the outer boundary of 94% signifies that 6% reported worse fatigue. The length of the segment is 29%, which equals the percentage of participants with a 15-year disease duration who recorded their PS score as 4. Figure 1. Mobility (N = 23,860)

Figure 2.

Hand function (N = 23,931)

Figure 3.

Vision (N = 23,880)

Figure 4.

Fatigue (N = 23,918)

Figure 5.

Cognition (N = 23,961)

Figure 6.

Bladder/bowel function (N = 23,816)

Figure 7.

Sensory (N = 23,830)

Figure 8.

Spasticity (N = 23,842)

Figure 9.

Pain (N = 7494)

Figure 10.

Depression (N = 9607)

Figure 11.

Tremor/coordination (N = 7499)