Identifying distinct symptom profiles in people living with MS: Implications for quality of life and clinical care

People with MS (PwMS) experience multiple symptoms, often simultaneously. This makes understanding how symptoms present as a 'bigger picture' challenging. We aimed to categorise PwMS into profiles using intensity scores for 14 MS symptoms.

Symptoms were assessed using MS Symptom Scores (13 symptoms, range 0-10, higher=worse); sleep quality was assessed using the Pittsburgh Sleep Quality Index (1 symptom, rescaled 0-10). Cross-sectional data were analysed using latent profile analysis. Symptom profiles were validated against AQoL-8D health-related quality of life (HRQoL) health state utility, and super- and individual-dimensional scores (range 0-1) using linear regression.

Study participants (n = 1411) were older adults (mean 58 years, 80 % female), 62 % had relapsing remitting MS, 54 % had moderate-severe MS disability. Latent profile analyses suggested four symptom profiles: 'low' (12 %), 'moderate' (20 %), 'high' (52 %), and 'mixed' (16 %). The latter profile constituted PwMS with moderate-high symptom intensity, but minimal anxiety/depression. Profiles had different demographic and clinical characteristics, indicating underlying heterogeneity. Greater symptom intensity was associated with lower HRQoL in a dose response manner. However, PwMS without depression and anxiety reported relatively high HRQoL despite high physical symptom intensity. Sleep may be an independent silent symptom of MS.

Symptom profiles had complex dose-response relationships with HRQoL with sleep having important independent effects. Reducing anxiety and depression and improving sleep may improve HRQoL even in those with high symptom intensity. Profiles have distinct demographic and clinical characteristics, suggesting drivers of symptom profiles are complex and include factors such as relapses and obesity.