Sunnaas International Network Pediatric Spinal Cord Injury Study - an International Multicenterstudy in Seven Countries

INTRODUCTION Spinal cord injury (SCI) before the age of 15 is rare affecting less than 1 in every 100 000 children. Over the past decade the management of pediatric spinal cord injury and the long-term outcomes have received increased attention, however, most research has its origin from the US. Thus, there is a need for more knowledge about occurrence and causes, functional recovery, activity, participation and quality of life in children and adolescents in other countries than the US. Moreover, a systematic review 2011 shows that there is limited evidence about the effectiveness of interventions for the management of children with SCI.

Knowledge regarding organization of care and rehabilitation is incomplete and differences between countries are substantial. Also, comparisons of data between countries and studies have been problematic due to differences in case definitions and age limits as to what is considered pediatric as opposed to adult SCI. Therefore, there is a need for international collaboration and research within the area of pediatric SCI with uniformity in methodology in the gathering of information and publication of the data to compare results between countries.

Due to the low incidence of pediatric SCI and the demand for more knowledge and research, international cooperation is needed for purposes of building a solid and common understanding of the scope of the problem and uniformity in management and methodology.

To reach this goal in the SIN context there is a need to benchmark between units, to highlight opportunities to improve systems of care and service delivery and to provide an understanding of the context of the units and the similarities and differences between them as this will be important for interpreting the results from subsequent phases of this project when patient outcomes are reported.

Exploration of psycho-social issues from the perspective of the affected young persons and their families will assist targeting issues that are clinically and socially relevant for future service and future research cooperation. In addition, to be able to gather information to compare results between countries it is important to establish use of common outcome measures.