Organisation of services and systems of care in paediatric spinal cord injury rehabilitation in seven countries: a survey with a descriptive cross-sectional design

Study design International multicentre cross-sectional study. Objectives To describe the organisation and systems of paediatric spinal cord injury (SCI) rehabilitation services in seven countries and compare them with available recommendations and key features of paediatric SCI. Setting Ten SCI rehabilitation units in seven countries admitting children and adolescents with SCI < 18 years of age. Methods An online survey reporting data from 2017. Descriptive and qualitative analysis were used to describe the data. Results The units reported large variations in catchment area, paediatric population and referrals, but similar challenges in discharge policy. Nine of the units were publicly funded. Three units had a paediatric SCI unit. The most frequent causes of traumatic injury were motor vehicle accidents, falls, and sports accidents. Unlike the other units, the Chinese units reported acrobatic dancing as a major cause. Mean length of stay in primary rehabilitation ranged between 18 and 203 days. Seven units offered life-long follow-up. There was a notable variation in staffing between the units; some of the teams were not optimal regarding the interdisciplinary and multiprofessional nature of the field. Eight units followed acknowledged standards and recommendations for specialised paediatric SCI rehabilitation and focused on family-centred care and rehabilitation as a dynamic process adapting to the child and the family. Conclusions As anticipated, we found differences in the organisation and administration of rehabilitation services for paediatric SCI in the ten rehabilitation units in seven countries. This might indicate a need for internationally approved, evidence-based guidelines for specialised paediatric SCI rehabilitation.

Automated summary

There are significant differences in paediatric spinal cord injury rehabilitation services among countries, including variations in service scope, staffing, and rehabilitation policies. Chinese units reported acrobatic dancing as a major cause, which was unique compared to other units. There is a need for internationally approved, evidence-based guidelines for specialised paediatric SCI rehabilitation.