Pediatric spinal cord injury in a subset of European countries.

Study Design: Postal survey.

Setting: A total of 19 countries in Europe.

Objectives: Firstly, to collect information about incidence and systems of care for pediatric spinal cord injury (pedSCI); including prevention, initial care and follow-up in a subset of European countries. Secondly, to initiate a network of involved professionals for exchange of information and development of research and care programs.

Methods: A short semi-structured questionnaire was sent to respondents working with spinal cord injury (SCI) in 19 countries in Europe.

Results: Only in Portugal and Sweden, is the incidence of pedSCI (fatal injuries included) established, that is 27 children/million children/year and 4.6 children/million children/year, respectively. For the other countries, the estimated incidence of pedSCI (nonfatal injuries) varied from 0.9 to 21.2 children/million children/year in the age group of 0-14 years. Although the incidence varies considerably, pedSCI is rare throughout Europe. The management differs between the countries depending on the age of the child and the local organization of health care.

Conclusions: The survey confirms that pedSCI is rare. In order to establish high-quality standardized care, further integration of knowledge in this area is needed throughout Europe. The contacts initiated by this survey may be used to create an international network serving as a reference for health professionals, researchers and families, thereby possibly alleviating some of the unwanted variations of care identified in this study.