Symptom profiles in MS: Comparing symptoms and quality of life indicators of a large sample of individuals with MS to population norms.

TitleSymptom profiles in MS: Comparing symptoms and quality of life indicators of a large sample of individuals with MS to population norms.
Publication TypeJournal Article
AuthorsBamer AM, McMullen KA, Amtmann D
JournalQuality of life research
IssueSuppl 1
Humans, Quality of Life, Research

Aims: The current scientific literature indicates that individuals with multiple sclerosis (MS) report higher levels of fatigue, pain, depression, cognitive difficulties, and other symptoms. The magnitude of this difference is often difficult to quantify because scales used to measure the individual symptoms or quality of life (QoL) indicators use different metrics and often do not provide norms. The PROMIS and Neuro-QOL measures funded by NIH and developed with modern psychometric methods use a common metric and provide US population norms. The aim of the current study was to examine profiles of symptoms and QoL indicators in persons with MS as compared to the PROMIS and Neuro-QOL population norms. Methods: PROMIS or Neuro-QOL measures of fatigue, pain, anxiety, depression, sleep disturbance, wake disturbance, executive functioning, general cognitive concerns, and global mental and physical health were administered to a sample of individuals with MS (N=613) participating in an ongoing longitudinal survey. Scores were compared to the PROMIS or Neuro-QOL population norms for the overall sample, by sex, and by age. Results: Individuals with MS reported statistically significantly higher pain, fatigue, depression, anxiety, sleep disturbance, and wake disturbance than the US population means (all p<0.001). These differences ranged from 1.3 (anxiety) to 8.2 (fatigue) on the T-score metric with a mean of 50 and standard deviation of 10. Individuals with MS reported lower general and executive cognitive function, global mental, and global physical health (all p<0.001). These differences ranged from -4.8 (global mental) to -7.7 (general cognition). The gender analyses were similar to the full sample results, although consistent with published literature women reported on average lower levels of symptoms than men, with the exception of general cognitive function. Age group results suggest that older individuals with MS (65+) experience more fatigue, pain, and worse global mental and physical health than younger individuals with MS when compared to the age appropriate norms. Conclusions: Symptom profiles generated by using the PROMIS and Neuro-QOL scores provide an easy way to display and understand differences between MS and the population norms across multiple domains. MS specific norms would be a useful extension of the current profiles.

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