Survey of Pain and Fatigue in Adults with Disabilities

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 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)).

The study involves two phases, an initial survey of individuals with MS and SCI and five follow-up surveys at four to five month intervals. In the initial phase of our study, we received 1090 surveys from individuals with MS and 578 surveys from individuals with SCI. Of those individuals who participated in our initial survey, 460 people with MS and 230 people with SCI were randomly selected to participate in our follow up surveys. Currently we are collecting data for the third of five follow-up surveys. We plan to start data collection for the third follow-up survey (fourth survey overall) in early 2007.

We are not currently recruiting new participants for this study.