MS Survey of Symptoms and Quality of Life
Dagmar Amtmann, PhD, Kurt Johnson, PhD
In 2006-2007, we enrolled 1,271 people living with multiple sclerosis (MS) into our first survey. Little did we know at that time, this would become an annual survey that is now in it's 6th year. We've been following a sub-group of these people living with MS who live mostly in the northwest region of the United States. Our survey is mailed out and filled out by hand and returned to us. 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. We continue to be amazed at this wonderful group of people who take the time to fill out our survey each year and keep in contact with us.
We use evidence-based questionnaires in our survey. This means we ask questions about fatigue that have been proven to reliably measure the concept of fatigue and are appropriate for people with MS. Here are some examples of the some of the evidence-based questionnaires we use:
- National Institute of Health's PROMIS (Patient-Reported Outcomes Measurement Information Systems)
- Quality of Life Outcomes in Neurological Disorders - NeuroQoL
- University of Washington's Self-Efficacy Scale for Multiple Sclerosis
The enrollment status for the MS Survey is currently closed. We're not looking for any new participants at this time.