Study design: Cross-sectional survey.
Objectives: To describe the care received, care needs and preventability of secondary conditions according to persons with long-term spinal cord injury (SCI) living at home.
Setting: The Netherlands.
Methods: A questionnaire was sent to all members of the Dutch SCI Patient Organisation. From a list of 26 SCI secondary conditions, participants chose the five conditions they perceived as most important. For each of these conditions, they described the type of care they received, their need for (extra) care and its preventability.
Results: Response rate was 45% (n=453) and mean time after injury was 13.3 years. In case of secondary conditions, participants were more likely to visit their general practitioner (58%) than another medical specialist (29%) or rehabilitation specialist (25%). For all most-important secondary conditions, care was received in 47% and care, or extra care, was needed in 41.3%. Treatment was the type of care most often received (29.5%) and needed (17.2%). However, for information and psychosocial care, the care needed (12.2 and 9.9%, respectively) was higher than the care received (7.6 and 5.9%, respectively). Thirty-four percent of all most-important secondary conditions were perceived as preventable, the rate increasing to 52.8% for pressure sores, of which 29.9% were considered to be preventable by the participants themselves.
Conclusions: This study showed substantial unmet care needs in persons with long-term SCI living at home and underlines the further improvement of long-term care for this group. Information, psychosocial care and self-efficacy seem to be the areas to be enhanced.