QOL03
Severity and Progression of Fatigue Among Individuals with Multiple Sclerosis
Fatigue is commonly reported in persons with Multiple Sclerosis (MS) and associated with poor quality of life, reduced social participation and performance of daily activities. However, most studies examining fatigue are limited to smaller sample sizes or short follow-up.
Objectives:
To characterize the natural history of fatigue worsening in persons with MS.
Methods:
The NARCOMS Registry collects longitudinal health-related information from enrolled registry participants through semi-annual update surveys. Participants included had ≤ 7 years of longitudinal data between 2004-2019, a relapsing disease course at enrollment (RMS) with ≤ 5 years since their MS diagnosis. Fatigue was assessed using the Fatigue Performance Scale (FPS), a single item measure with 6 response options: normal (0) to total (5). Fatigue worsening was defined as at least a 1-point increase in FPS sustained at the next survey. Index fatigue level was the FPS at first update survey. Disability was measured using the Patient Determined Disease Steps (PDDS).
Results:
Of 3057 participants with longitudinal data, 30.9% (n=944) were within 5 years of MS diagnosis and RMS. Participants were 83.5% female, 87.5% white, with mean age of 44.5 at enrollment and 42.6 years at diagnosis and median PDDS of 2 (moderate disability). At index, 9.4% reported normal, 17.8% minimal, 23.8% mild, 24.4% moderate, 20.6% severe and 4.0% total fatigue. The mean age at index and at diagnosis increased as fatigue levels increased (both p<0.001), however age at symptom onset was similar across FPS (p=0.94). Participants were more likely to report relapse in 6 months prior to index with higher index fatigue (p=0.028). No difference in disease modifying therapy use by FPS was observed (p=0.11). Except for those with severe fatigue, a majority of participants at each FPS level reported worsening fatigue: no,69.7%; minimal,71.4%; mild,60.9%; moderate,57.4%; severe, 20.6%. The time to fatigue worsening ranged from 3.2-5.4 years across each level of fatigue. In those with minimal or mild index fatigue, significantly greater proportion with fatigue worsening reported PDDS progression than no worsening (minimal: 73.3% vs 47.9%; mild: 75.2% vs 51.1%, P<0.01).
Conclusions:
Most MS participants early in their disease suffer from at least mild fatigue and at least half reported worsening fatigue over time. As participants with worsened fatigue also report disability progression, such associations should be examined further.