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Logo for the Journal of Rehab R&D
Vol. 40 No. 4, July/August 2003, Supplement
Pages 93 — 98

The consumer's perspective and the professional literature: What do persons with spinal cord injury want?

Irene M. Estores, MD
University of Miami, Rehabilitation Medicine, Miami, FL; Miami Veterans Affairs Medical Center,
Center of Excellence in Recovery in Chronic Spinal Cord Injury, Miami, FL
Abstract — Different motives and purposes drive research. New knowledge advances any discipline, and use of the information obtained from careful scientific study as the basis for clinical practice promotes patient care. It is important to consider the preferences of persons with spinal cord injury (SCI) and use this as the framework in formulating research questions and clinical applications of discoveries made in the laboratory. A literature review of articles related to the interests and concerns of persons with SCI was conducted through the National Library of Medicine resource. Patient interest in finding a "cure" for SCI was not directly ascertained by any of the studies reviewed. Mobility remains the area of greatest interest, and decreased mobility has been rated as the most difficult consequence to deal with after the injury. This review indicates a congruence of the interests of both patients and researchers. However, the methodology most often used to ascertain the preferences of persons with SCI may need to be supplemented with different approaches. In addition, these preferences and the factors that influence them should be longitudinally assessed.
Key words: consumer preference, rehabilitation research, spinal cord injury.
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