People with multiple sclerosis report significantly worse symptoms and health related quality of life than the US general population as measured by PROMIS and NeuroQoL outcome measures.

BACKGROUND: Individuals with multiple sclerosis (MS) report fatigue, pain, depression, cognitive difficulties, and other symptoms. It is often difficult to compare symptoms across studies and populations because scales used to measure individual symptoms or quality of life indicators (QOLI) use different metrics and often do not provide norms. PROMIS and Neuro-QOL measures, developed with modern psychometric methods, use a common metric and provide population norms.

OBJECTIVE: To create symptom profiles and compare symptoms and QOLIs of people living with MS to a US general population sample.

METHODS: Data from observational cross-sectional survey studies of 1544 community dwelling individuals with MS were analyzed. T-tests and non-parametric tests were used to examine whether symptoms or QOLIs of people with MS differed from the general US population. Regression analyses were used to adjust differences for age and sex. Measures included PROMIS or NeuroQoL anxiety, depression, fatigue, sleep disturbance and related impairment, pain interference, physical function, satisfaction with social roles, and applied cognition. Symptom levels were also compared by age, gender, and disability level.

RESULTS: Scores on all health domains were statistically significantly (all p < 0.001) worse than the general US population and six domains had scores worse by half standard deviation or more. These differences remained significant after adjusting for age and sex.

CONCLUSIONS: Individuals with MS report clinically meaningful worse health compared to the general population across multiple health related domains. Symptom profiles utilizing PROMIS or NeuroQoL measures can be used to quickly assess symptom levels in an individual or group.