STUDY UNDER DEVELOPMENT #1:
Ambulation and Secondary Complications: Participants with Chronic Spinal Cord Injury.
Submitted to the National Institute for Disability and Rehabilitation Research (NIDRR) of the Office of Special Education and Rehabilitative services (OSERS) United States Department of Education.
During the past decade, we have seen the emergence of studies of ambulatory training among people with spinal cord injury (SCI). The proliferation of the studies, along with basic science research into the mechanisms of SCI and clinical trials of new interventions to preserve or restore function, has increased optimism that walking will be a viable option for people with SCI. However, although this research has established short-term gains related to intensive rehabilitation training, it is unclear as to whether these interventions will result in functional ambulation or whether there may be adverse consequences of long-term ambulation, such as increased secondary conditions including pain or fatigue. The purpose of this study is to identify variations in ambulation after SCI and their association with pain, fatigue, participation, depressive symptoms, and quality of life. A consumer panel will meet throughout the study to review instruments and procedures, provide interpretations of results, recommend alternative analyses, and assist with identifying additional outlets for dissemination. To accomplish this goal, we will pilot test and refine our self-report measure of ambulation which combines parameters used in existing measures including distance, assistance from others, use of assistive devices (e.g., braces, a walker, cane, crutches), whether ambulation is functional, and use inside or outside the home. Pilot testing will be conducted in two stages. We will pilot test the self-report measure of ambulation by comparing the self-report of 20 participants with SCI to clinical assessments performed by two co-investigators who are blinded to other assessments (both are PhD-trained physical therapists). Second, we will pilot test the full instrument package that includes the self-report measure of ambulation and outcome measures on a different group of 20 participants. During primary data collection, we will elicit responses to the instrument package from a total of 616 participants who are ambulatory, with an anticipated 428 returns. In addition to describing patterns of ambulation based on the parameters under investigation, we will identify significant relationships between ambulation parameters and pain, fatigue, participation, depressive symptoms, and quality of life. We will also use linear regression to test a mediational model that hypothesizes that the relationship between the ambulation and participation is mediated by the development of pain and fatigue (ie, diminished participation is precipitated by the onset of pain and fatigue related to ambulation) and that participation mediates the extent to pain and fatigue lead to diminished quality of life and increased depressive symptoms (ie, poorer psychosocial outcomes are precipitated by decreased participation related to pain and fatigue). The findings will be disseminated to both consumers and rehabilitation professionals through a combination of publications in refereed journals, presentations at professional conferences, and articles through consumer sources, including web sites. This study will help us to identify the extent to which ambulation is a realistic option for people with SCI in the years and decades after onset, rather than the short time period immediately after injury. It will also help to determine whether it is a viable option to increase participation in the community, rather than in controlled treatment environments, and whether there is a price to be paid for this participation in terms of increased pain, fatigue, depression and diminished quality of life.