Pediatric spinal cord injury rehabilitation: A protocol for an international multicenter project (SINpedSCI).

PURPOSE: Children and adolescents (<18 years old) who sustain a spinal cord injury (SCI) should ideally be managed in specialized rehabilitation services. This project aims to describe the organization of pediatric SCI in ten rehabilitation units in seven countries and to qualitatively explore psychosocial aspects of adolescents living with SCI. METHODS: A multicenter cross-sectional project is planned, using quantitative (web survey) and qualitative (interview) methods in ten rehabilitation units from Norway, Sweden, United States, Israel, PR China, Russia and Palestine. Individual interviews will be conducted with ≥20 adolescents aged 13-17 years at least 6 months' post rehabilitation. RESULTS: Units involved will be described and compared, according to funding, attachment to an acute SCI unit, catchment area, number of beds, admittance and discharge procedures, availability of services, staff/patient ratio, content and intensity of rehabilitation programs, length of stay, measurement methods, follow-up services, health promotion services, and pediatric SCI prevention acts. The semi-structured interview guide will include experiences from acute care and primary rehabilitation, daily life, school, contact with friends, leisure time activities, peers, physical and psychological health, and the adolescents' plans for the future. CONCLUSION: Based on the present protocol, this project is likely to provide new insight and knowledge on pediatric SCI rehabilitation and increase the understanding of pediatric SCI in adolescents and their families internationally.

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.

Development of the International Spinal Cord Injury/Dysfunction Education Basic Data Set.

Study design: Consensus among international experts. Objectives: The objective of this project was to develop the International Spinal Cord Injury/Dysfunction (SCI/D) Education Basic Data Set. Setting: International expert working group. Methods: The published guidelines for developing the International SCI Basic Data Sets were used to develop the International SCI/D Education Basic Data Set. Existing measures and literature on education and disability were reviewed to develop a preliminary draft of the basic education data set through iterative modifications via biweekly conference calls and email communication. The draft was disseminated to the larger International Workgroup for Development of Pediatric SCI/D Basic Data Sets and then to the members of the International Spinal Cord Society (ISCoS), American Spinal Injury Association (ASIA), and relevant expert groups and interested individuals for comments. All feedback received was taken into consideration before the final data set was approved by ISCoS and ASIA. Results: The finalized version of the International SCI/D Education Basic Data Set Version 1.0 contains 16 items divided into three domains: school setting/therapeutic services, school participation/academic success, and barriers/attitudes. Most of the variables have been adapted from established measures. This data set is intended for children and youth up to and including high school, but not for emerging adults in higher education or postsecondary vocational training or trade schools. Conclusion: The International SCI/D Education Basic Data Set has been developed for collection of a minimal amount of highly relevant information on the education experience in children and youth with SCI/D. Further validation work is needed. Sponsorship: This project was funded by the Rick Hansen Institute, Research Award #G2015-27 (Mulcahey, PI).

The International Spinal Cord Injury Pediatric Activity and Participation Basic Data Set.

Study design: International focus groups. Objectives: The objective of this project was to develop the International Spinal Cord Injury (SCI) Pediatric Activity and Participation (A&P) Basic Data Set. Methods: A focus group of experts in pediatric and adult SCI, and contributors of the existing adult International SCI Adult A&P Basic Data Set convened to develop an initial draft of the data set, which was iteratively refined over a 12 month period based on relevant literature and existing outcome measures that evaluate pediatric activity and participation. The draft was reviewed and approved by the larger project working group and then distributed to the International Spinal Cord Society (ISCoS), American Spinal Injury Association (ASIA), and relevant expert groups for review. Feedback received was considered before the final data set was approved. Results: The International SCI Pediatric A&P Basic Data Set is comprised of 13 variables: administration date, mobility, dressing, feeding, toileting, communication, family outings, spending time with friends, being out with friends, participating in team or club activity, paid work, dating, and physical activity. It is intended for children between 6 and 17 years of age, who have been discharged from initial rehabilitation/hospitalization for a minimum of 3 months. Conclusion: The International SCI Pediatric A&P Basic Data Set was developed to standardize the recording of a minimal amount of information about activities and participation in children with SCI. Further work on reliability and cultural validation is needed. Sponsorship: This study was funded by the Rick Hansen Institute, Research Award #G2015-27 (Mulcahey, PI).