Survey of Pain and Fatigue in Adults with Disabilities

Study Goals

Pain and fatigue are the most common patient-reported symptoms cutting across a broad range of chronic diseases and conditions. They often occur together, yet the association has not been adequately studied and understood, and we lack adequate knowledge about the longitudinal patterns of pain and fatigue.

The specific aims of this project are: 1) to develop a psychometrically validated instrument or battery of instruments for measuring pain, fatigue, social participation, emotional distress and physical functioning in persons with disabilities; 2) to improve current measures of patient-reported outcomes and 3) to increase scientific understanding of the course of pain and fatigue and their associations with important outcome measures including depression, participation and disability level.

Our primary hypothesis is that both pain and fatigue will be significantly associated with participation, contributing above and beyond to the effects of depression and disability. We also expect the magnitude of the effect to differ depending on medical diagnosis (multiple sclerosis (MS) or spinal cord injury (SCI)).

Study Participation

The study involves three phases, an initial survey of individuals with MS and SCI, five follow-up surveys at four to five month intervals, and four-six follow-up surveys at six months to one year intervals. In the initial phase of our study, we received 1271 surveys from individuals with MS and 620 surveys from individuals with SCI. Of those individuals who participated in our initial survey, 512 people with MS and 321 people with SCI completed our 4-month follow-up survey (Point 2). Our 8-month survey (P3) was completed by 490 MS participants and 280 SCI participants. 474 individuals with MS and 262 individuals with SCI completed our 12-month survey (P4). 459 MS participants and 235 SCI participants completed our 16-month survey (P5). 443 MS participants and 224 SCI participants have completed the 20 month survey (P6). We are currently working on developing our seventh survey.

We are not currently recruiting new participants for this study.

Project Outcomes

Outcome #1: Relationships Between Pain, Fatigue, and Depression

We used a complicated statistical method to look at the relationship between pain, fatigue, and depression using your survey responses. These results can then help us to figure out what symptoms should be treated first or at the same time as each other. We found that all of these symptoms affect each other. For example, people who answered questions that indicated they were more depressed were more likely to have higher fatigue and more sleep problems. People with pain were also more likely to be depressed or have sleep problems. These results will hopefully be published or presented in the near future. They will also help us figure out what other data analyses to do in the future.

Outcome #2: Sleep Problems

Over time there has been very little research related to sleep problems in people with MS. We asked participants to fill out two different questionnaires about sleep. Using responses to those questions we were able to look at how many people with MS have sleep problems. We found that over 50% of the people in our study had significant problems sleeping. This is a higher percentage than people with other chronic conditions such as diabetes and congestive heart failure.

We presented these results at the annual MS Centers conference and won an award for our presentation. We also wrote a paper about this topic and you can read the abstract online by googling the authors of the paper. (Bamer AM, Johnson KL, Amtmann D, Kraft GH. Prevalence of sleep problems in individuals with multiple sclerosis. Mult Scler. 2008;14(8):1127-1130.

Outcome #3: Falls

In the fourth survey we asked participants a bunch of questions about falling. Using their responses we were able to estimate how often people with MS have a fall on average. 59% of people in the fourth survey reported one or more falls in the previous 6 months. Of the people who fell, about half were injured from their fall. Also, about half of fallers reported speaking to a health care provider about falls and balance problems. This research suggests that many people with MS often have a fall, and that falls often result in serious injuries. These results also indicate that doctors and nurses should regularly talk to people with MS about falls. People who have fallen should also talk to their doctor about the fall and about ways to prevent falling in the future.

Other Outcomes:

We have also summarized participant responses to questions about assistive technology and employment.

If you would like more information about our research results please contact us and we would be happy to share more of them with you.