Study design: Systematic review.
Objectives: (1) To describe and compare follow-up care programmes, performed by rehabilitation centres, for persons with spinal cord injury (SCI) and (2) to describe the effects of these programmes regarding the occurrence of secondary impairments, well-being, the quality and costs of care.
Methods: A systematic literature search was conducted in MEDLINE (1972-2003) and CINAHL (1982-2003). Publications were selected about medical and/or nursing follow-up care to SCI patients living in the community performed by or with rehabilitation facilities for SCI patients. The aim of the follow-up care should be a decrease of secondary impairments, an improvement of well-being, an improvement of the quality and/or a decrease of the costs of care.
Results: The search resulted in 24 papers. The descriptions of the programmes in these papers were sometimes rather scattered, vague or brief. The most important methods were telemedicine (six programmes; of which five were performed in the same rehabilitation centre), outpatient consulting hours (six programmes), home visits (three programmes, and case management (one programme). Eight other programmes combined several methods (ie outpatient consulting hours, home visits, peer teaching and support, outings, ongoing support, therapy from several care disciplines, SCI education, providing SCI expertise and support to community health-care providers, coordination of care with community nursing agencies). In all, 16 programmes have been evaluated to some degree. In general the quality of the studies was low. Most evaluations were pre-experimental in design. Only three were quasi-experimental, and two programmes were experimental in design. Although several studies claimed positive effects, it was not possible to draw conclusions on the effect of follow-up care on the occurrence of secondary impairments, well-being, the quality and costs of care.
Conclusion: There is a need for the development, the publication and the well-designed evaluation of follow-up care programmes for persons with SCI.