A model of outcomes research: spinal cord injury.

Abstract

To use spinal cord injury (SCI) care and research as a paradigm to illustrate how the principles and practices of outcomes research have been and can be applied to the sequelae of a specific disability. Review of data sources and literature pertaining to outcomes of SCI. English language literature, health status and health services research agencies, academic and governmental research, and surveillance settings. A critical review of measures that have been and may be used to measure the outcomes of SCI. Special attention was paid to data sources; the need for methodologic accommodations: the research balance between generic and condition-specific methods; and the measurement outcomes that are highly relevant to people with SCIs. There is a substantial research record related to the natural history, rehabilitation, survival, and long-term social reintegration of people with SCI, but relatively less addressing widely used generic health outcomes. Contemporary outcomes research is relevant to people with SCI and those who provide treatment. One area of special attention is the occurrence of secondary conditions. To a large extent, SCI outcomes research can use conventional methods and generic instruments. There also is a need to modify research methods and to refine and apply some measures specific to people with SCI.