Abstract: The University of Washington Center on Outcomes Research in Rehabilitation (UWCORR) has the broad, long-term objective of facilitating clinical research in pain and fatigue by developing psychometrically validated measures of pain and fatigue in children and adults with disabilities. In addition, UWCORR aims to increase the scientific understanding of pain and fatigue in children and adults with disabilities.
The independent research project will conduct two studies. Study 1 is a cross-sectional study of pain and fatigue and their impact on important outcome measures (participation, depression, and disability level) in 1,200 adults and children. Study 2 is a prospective, longitudinal study with 300 adults and children assessed on the set of core measures over six 6-month intervals. We will use item response theory modeling framework and other appropriate methods to refine the items and scales and to propose a set of improved core measures/items for assessment of pain and fatigue in adults and youth with disabilities. We will also test the associations between pain and fatigue and their relationship to depression, level of disability, and participation in activities using both cross-sectional and longitudinal data. Better understanding of the association of pain and fatigue with important outcomes will allow us to select those items/scales that are most strongly associated with the changes in the outcome variables. Data from Study 2 (longitudinal) will be used to identify reliable subgroups within and across different disability groups characterized by trajectories with a certain pattern of pain and fatigue symptoms. This will inform the final selection of items/scales most relevant to each of the subgroups identified as well as research on treatment and management of pain and fatigue.
UWCORR will support PROMIS network activities by ensuring that the computer adaptive testing interface is developed with the universal design principles to assure that the system is accessible to researchers and participants with disabilities, including those who use assistive technology.