A model of outcomes research: Spinal cord injury

Objective: 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. Data Sources: Review of data sources and literature pertaining to outcomes of SCI. Study Selection: English language literature, health status and health services research agencies, academic and governmental research, and surveillance settings. Data Extraction: 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. Data Synthesis: 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. Conclusion: 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. (C) 2000 by the American Congress of Rehabilitation Medicine.