Survey of Symptoms and Quality of Life

What's this research about?

Beginning in 2006, we enrolled 1,271 people living with multiple sclerosis (MS) into our first survey. In what became an annual survey, we collected 9 surveys over the last 9 years. We've followed a group of people living with MS who live mostly in the northwest region of the United States. Our survey collects information on demographics (age, gender, etc.), information about MS (severity, duration, relapses, type of MS), employment, participation, secondary symptoms (pain, fatigue, depression, problems sleeping, problems thinking, etc.), and other factors such as social support, resilience, stress, and coping skills. 

What does this study involve?

This study was successfully completed. The enrollment status for the MS Survey is currently closed. We're not looking for any new participants at this time. It did involve filling out a paper survey and returning it to our research center. 

What did the researchers find?

All of our research articles are listed in our publications section. This survey has yielded a wealth of findings. Some key findings include:

  • We found individuals with MS reported significantly higher levels of 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. 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.
  • We evaluated the psychometric properties of three different depression scales in 455 adults with MS.  We found that, overall, all three scales could be used by clinicians to measure depressive symptoms.  The PHQ-9 offers validated cutoff scores for diagnosing clinical depression, the 8-item PROMIS depression scale allows for more flexible administration using CAT testing, and the CESD-10 is able to measure both depressed mood and lack of positive affect while still providing an interpretable score.
  • We developed a crosswalk between two pain measures, the PROMIS Pain Interference short form and the Brief Pain Inventory (BPI).  This will allow researchers or clinicians to compare PROMIS Pain Interference short form scores into BPI Pain Interference scores, in order to maintain continuity with previous research.
  • We developed a crosswalk between two fatigue measures, the Modified Fatigue Impact Scale (MFIS) and the PROMIS Fatigue Short-Form. Cross-walk tables allow data from studies using different measures of fatigue to be combined to achieve larger sample sizes and to compare results. These tables are valid for group-level analyses with sample sizes of 150 or greater.
  • Depression and pain are highly prevalent among individuals with multiple sclerosis, and they often co-occur. Both depression and pain impact quality of life, medical utilization, and the effectiveness of interventions. Although there are effective interventions for depression and pain, no interventions have yet been developed that target comorbid pain and depression in individuals with MS.
  • Fatigue substantially affects the quality of life of persons with MS. People with MS ranked self-reported items in respect to their relevance in measuring fatigue. The most highly ranked items were, “How often did you feel tired even when you haven’t done anything,” and “How often did you have to push yourself to get things done because of your fatigue.” No self-report measure can gather the detailed and personally relevant information that can be elicited by a skilled clinician. It is possible, however, that standardized measures may pave the way for such communication.
  • Fatigue may play a minor role in sleep disturbance in MS and clinicians should consider the interrelationship between depression and sleep problems when treating either symptom in MS. More research is needed to explore the possibility of under-treatment of sleep disorders in MS and examine the potential effectiveness of non-pharmaceutical treatment options.
  • People with MS who are younger and employed report more satisfaction with participation in life activities. Ratings of satisfaction with participation were also consistently associated with a number of variables including less fatigue, pain, depression, stress, anxiety, as well as higher overall measures of well-beings.
  • We examined the advice that health care providers give women about pregnancy in the context of MS. We found there is very little consistency in what providers recommend and that establishing guidelines would be very helpful. In addition, we reported on the experiences of pregnancy from the perspective of women with MS. Over half of the sample had children, and 14.2% of the sample became pregnant after their MS diagnosis. Many of these women did not discuss pregnancy or breastfeeding with their physicians or healthcare providers. One-third of women reported that their first pregnancy after their MS diagnosis changed their attitude about future pregnancies.
  • We have developed several new patient-reported outcome measures for constructs that are critically important for people living with MS:
    • PROMIS Fatigue Short-Form for MS, is a measure specifically designed for people living with MS. Fatigue is one of the most commonly reported secondary conditions for people living with MS and is also the focus of programming to alleviate the impact of fatigue on people’s lives.
    • UWCORR Self-Efficacy Scale for Disease Management, we developed a generic, an MS-specific and SCI-specific versions of this scale.  Chronic disease self-management is a proven program to help people manage the every-day issues of living with a chronic disease.  It is crucial to have measure that is sensitive enough to measure change in randomized controlled trials or community-based participatory research in order to evaluate the efficacy and effectiveness of these programs.

About the researchers:

Dagmar Amtmann, PhD is a researcher in rehabilitation medicine who studies health and well-being. Dagmar is interested in how to ask the best questions about health and teaches about what and how researchers and clinicians should measure in clinics and studies. 

Kurt Johnson, PhD is a rehabilitation psychologist who is known for his employment and secondary conditions work in MS. Kurt also is interested and involved with assistive technology, disability policy, and ADA guidelines. Kurt is an instructor in the University of Washington's Disability Studies courses. 

UW Medicine Multiple Sclerosis Center

Now located at Northwest Hospital & Medical Center, you may visit the clinic's website or call 206-598-3344 to make an appointment. 

Studies Seeking Volunteers:

Check out the current list of studies seeking volunteers.