The Sunnaas International Network Pediatric Spinal Cord Injury Study

Aim and research plan

The long-term goal of this research project is to optimize organization, care and rehabilitation in Norway and cooperating rehabilitation units internationally, to increase the awareness of subjective perceptions and psychosocial aspect of young persons with spinal cord injury, and to establish the use of outcome measures in local languages. Participants will be recruited from the rehabilitation hospitals cooperating within the Sunnaas International Network for Rehabilitation; Norway, Sweden, China, Russia, US, Israel, Palestine (SIN-units). Since 2021, Russia has temporally left the network and instead Denmark and Netherlands have joined.

Specific aims and objectives

- To survey the SIN units in order to describe the organization and delivery of inpatient rehabilitation services and systems of care for pediatric SCI patients

- To explore qualitatively psychosocial aspects of living with spinal cord injury in children and adolescents (and their caregivers) in SIN units using individual, semi-structured interviews

The recruitment will be done within the units cooperating in the Sunnaas International Network for Rehabilitation (SIN) and participating countries, local investigators, local collaborators and rehabilitation units.

In Study I (descriptive study/ survey) and study II (explorative study/ interviews), SIN-units in Norway, Sweden, China, Russia, US, Israel and Palestine will participate. The local principle investigator in each unit will be responsible for collecting data in Study I and recruiting individuals to participate in Study II of the study.

Inclusion criteria´s for the target group in study I.

• Children and adolescens (≤ 18 years)
• Diagnoses: either a non-traumatic or traumatic SCI
• Has been discharged from acute treatment phase for 6 months or more

Inclusion criteria´s in study II (interviews) are the same as in study I, except that the target group is adolescents 13-16 years of age.

Potentially eligible individuals with SCI will be identified from the departmental or institutional database. If no suitable database is present in an investigative site, recruitment through alternative databases will be explored and discussed with project collaborators.

Status of study II, 2022-12-14: All data is collected from 16 interviewed children in Norway, Sweden, China (two rehabilitation sites), Russia, US, Israel and Palestine. The interviews are not yet analyzed, but are planned to September 2023.

In addition, a Wiebeke Höfers, Norwegian PhD student, has interviewed eight Norwegian adolescents (Study III), the study is not yet published, “Returning to daily life after a pediatric spinal cord injury” (working title). Wiebeke gave a digital presentation of the preliminary results at the Steel Assembly, Orlando Florida, in Dec 2021. In April 2022, a poster was presented at the yearly assembly of the Norwegian Physiotherapy Association. The oral presentation at the ISCoS conference in October 2022 in Vancouver was unfortunately canceled.. 

There has been a development of a new research plan for the next phase of the SINpedSCI project, “A multinational approach to obtain good quality data in pediatric spinal cord injury rehabilitation”. In this phase there are closely collaborating with colleagues from Aleris Rehab Station Stockholm, Linköping, CRRC, Rusk and Tel Aviv and have included new partners in Denmark and the Netherlands. A first application to the South-Eastern Norwegian Regional Health Authority (HSØ) in September was unfortunately returned. New applications are planned for February, May, and September 2023. 

Pulished articles

Two articles are published with data from Study 1:

Pediatric Spinal Cord Injury Rehabilitation: a protocol of an international multicenter study (SINpedSCI)
Journal of Pediatric Rehabilitation Medicine (JPRM), accepted for publication Oct 19. 2021. Free PMC article.
Roaldsen KS, Jørgensen V, Höfers W, Sällström S, Augutis M, Ertzgaard P, Wahman K, Strøm M, Vege KM, Sørland K, Liu G, Zhang Q, Yang YX, Chen Y, Zakharova O, Trukhankina Z, Ghatasha A, Hamdan E, Krasovsky T, Guttman D, Sunnerhagen KS, New PW, Bushnik T, Sukhov R, Stanghelle JK.J.

Organisation of services and systems of care in paediatric spinal cord injury rehabilitation in seven countries: a survey with a descriptive cross-sectional design.
Spinal Cord. 2021 Nov 20. doi: 10.1038/s41393-021-00726-1. Online ahead of print. Epub 2021 Nov 20
Höfers W, Jørgensen V, Sällström S, Vege KM, Strøm M, New PW, Bushnik T, Zakharova O, Krasovsky T, Guttman D, Ghatasha A, Genlin L, Yang C, Yu-Xi Q, Wahman K, Sunnerhagen KS, Ertzgaard P, Sukhov R, Augutis M, Stanghelle JK, Roaldsen KS.