Spinal Cord Injury in the Pediatric population

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Project Leader

Kirsti Skavberg Roaldsen, senior researcher, professor.

PhD-candidate

Wiebke Höfers

Abstract

A spinal cord injury (SCI) in childhood (pediatric SCI) is very rare but has extensive and complex rehabilitation and follow-up needs, both because of the injury itself and because the injury coincides with the ongoing physical, social, and emotional development. Care is challenging due to extremely limited evidence regarding rehabilitation and follow-up worldwide. Systematic and standardized data collection is in limited use, and data comparisons between regions, studies, and countries are problematic, but highly needed due to the low incidence and heterogeneity of pediatric SCI. International cooperation is crucial for developing a common knowledge base enabling optimization of health, quality of life, and active participation in social life. Approximately 80% of Norwegian children and adolescents with SCI aged 0-18 years of age are given rehabilitation and life-long follow-up at Sunnaas Rehabilitation Hospital. As a little country, Norway depends on working closely with other countries in order to maintain a high level of competence in this area. Phase I of the present study is an ongoing international multicentre study on the organization of pediatric rehabilitation and follow-up across 10 rehabilitation units in Norway, Sweden, the USA, Israel, China, Russia, and Palestine.

Phase I includes studies both from the perspective of the rehabilitation units and the patients themselves and builds on two data collections; a web-based questionnaire, and individual semi-structured interviews. Phase I is in the data processing and publication phase. The results point to a big potential for improvement as there are notable gaps between the rehabilitation services offered and the recommendations and key features of pediatric SCI rehabilitation and follow-up.

Phase II is planned to start in 2024, depending on the outcome of applications for funding, and aims to implement relevant, good-quality, systematic, and standardized data collection in pediatric SCI rehabilitation and follow-up in Norway and collaborating Scandinavian countries. Phase III, a long-term implementation study, is under planning.

Norway:

Kirsti Skavberg Roaldsen, Mona Strøm; Vivien Jørgensen; Johan K Stanghelle; Wiebke Höfers¸ Kirsti Riiser; Susanne Sällström, Kristine-Marie Vege; Kristine Eide Sørland. Cooperation with the Norwegian and Nordic Spinal Cord Injury Registries (NorSCIR and NordicSCIR).

Denmark:

Fin Biering-Sørensen; Lars-Henrik Krarup.

Sweden:

Katharina Stibrant Sunnerhagen; Kerstin Wahman; Marika Augutis; Per Ertzgaard.

Israel:

Tal Krasovsky; Dafna Gutman.

USA:

Affua Asante; Renat Sukov; Tamara Bushnik.

Russia:

Zinaida Trukhankina; Olga Zakharova.

China:

Qi Yu-xi; Chen Yang; Gao Feng; Liu Genlin.

Palestine:

Jeries Shahwan; Atheer Ghatasheh.

Australia:

Peter New.

Ethical approval

Phase I is ethically approved in all cooperating countries.
REK no in Norway: 2017/1867.

Funding

South-Eastern Norway Regional Health Authority (HSØ), the Birgit and Rolf Sunnaas Memorial Fund, the Jakob and Inger Valsø's Foundation, and the Norwegian Ministry of Health and Care Services (HOD) who is funding the cooperation between Sunnaas and Russia.

Time period

Planning of the study started in 2017.
Data collection Phase I between 2018-2021.
Data processing and publication are ongoing.
The study is planned to end 2026-2027.