Skip to main content

Thank you for visiting nature.com. You are using a browser version with limited support for CSS. To obtain the best experience, we recommend you use a more up to date browser (or turn off compatibility mode in Internet Explorer). In the meantime, to ensure continued support, we are displaying the site without styles and JavaScript.

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

Abstract

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.

This is a preview of subscription content

Access options

Rent or Buy article

Get time limited or full article access on ReadCube.

from$8.99

All prices are NET prices.

Fig. 1: Flowchart of survey data collection on paediatric spinal cord injury rehabilitation.
Fig. 2: The main principles in paediatric spinal cord injury rehabilitation are shown here.

Data availability

The questionnaire used in the study is available as supplementary material. The data generated and analysed during the current study are available from the corresponding author upon reasonable request, after ethical considerations.

References

  1. 1.

    World Health Organization, International Spinal Cord Society. International perspectives on spinal cord injury (WHO Press, Geneva, 2013).

  2. 2.

    Chen Y, De Vivo MJ. Epidemiology. In: Vogel LC, Zebracki K, Betz RR, Mulcahey MJ (eds). Spinal cord injury in the child and young adult (Mac Keith Press, London, 2014) pp. 15–27.

  3. 3.

    Mulcahey MJ, Vogel LC, Sheikh M, Arango-Lasprilla JC, Augutis M, Garner E, et al. Recommendations for the National Institute for Neurologic Disorders and Stroke spinal cord injury common data elements for children and youth with SCI. Spinal Cord. 2017;55:33–40.

    Article  Google Scholar 

  4. 4.

    Galvin J, Scheinberg A, New PW. A retrospective case series of pediatric spinal cord injury and disease in Victoria, Australia. Spine. 2013;38:E878–82.

    Article  Google Scholar 

  5. 5.

    Greenberg JS, Ruutiainen AT, Kim H. Rehabilitation of pediatric spinal cord injury: from acute medical care to rehabilitation and beyond. J Pediatr Rehabil Med. 2009;2:13–27.

    Article  Google Scholar 

  6. 6.

    EACH European Association for Children in Hospital. The EACH Charter with Annotations (EACH European Association for Children in Hospital, 2016).

  7. 7.

    Vogel LC, Betz RR, Mulcahey MJ. Spinal cord injuries in children and adolescents. Handb Clin Neurol. 2012;109:131–48.

    Article  Google Scholar 

  8. 8.

    Southall DP, Burr S, Smith RD, Bull DN, Radford A, Williams A, et al. The Child-Friendly Healthcare Initiative (CFHI): healthcare provision in accordance with the UN Convention on the Rights of the Child. Pediatrics. 2000;106:1054–64.

    CAS  Article  Google Scholar 

  9. 9.

    American Spinal Injury Association (ASIA). Consumer guidelines. https://asia-spinalinjury.org/wp-content/uploads/2018/11/Consumer-Guidelines-v.-03082019.pdf. 2019.

  10. 10.

    Cott CA. Client-centred rehabilitation: client perspectives. Disabil Rehabil. 2004;26:1411–22.

    Article  Google Scholar 

  11. 11.

    Vogel LC, Zebracki K, Mulcahey MJ. Special considerations for rehabilitation of pediatric spinal cord injury. In: Chhabra HS (ed). ISCoS textbook on comprehensive management of spinal cord injuries (Wolters Kluwer, New Delhi, 2015).

  12. 12.

    Harnett A, Bateman A, McIntyre A, Parikh R, Middleton J, Arora M, et al. Spinal cord injury rehabilitation practices. In: Eng JJ, Teasell R, Miller WC, Wolfe DL, Townson AF, Hsieh JTC, et al. (eds). Spinal cord injury rehabilitation evidence. 2020. pp. 1–100. http://scireproject.com/wp-content/uploads/SCIRE_Rehab-Practices_V7.pdf.

  13. 13.

    Norrefalk JR. How do we define multidisciplinary rehabilitation? J Rehabil Med. 2003;35:100–1.

    Article  Google Scholar 

  14. 14.

    Wade DT. What is rehabilitation? An empirical investigation leading to an evidence-based description. Clin Rehabil. 2020;34:571–83.

    Article  Google Scholar 

  15. 15.

    Nicholson S, Clarke A. Child friendly healthcare. A manual for health workers. (Child Friendly Healthcare Initiative/Child Health Advocacy, 2005).

  16. 16.

    New PW, Townson A, Scivoletto G, Post MW, Eriks-Hoogland I, Gupta A, et al. International comparison of the organisation of rehabilitation services and systems of care for patients with spinal cord injury. Spinal Cord. 2013;51:33–9.

    CAS  Article  Google Scholar 

  17. 17.

    New PW. The assessment and selection of potential rehabilitation patients in acute hospitals: a literature review and commentary. Open Rehabil J. 2009;2:24–34.

    Article  Google Scholar 

  18. 18.

    Slade A, Tennant A, Chamberlain MA. A randomised controlled trial to determine the effect of intensity of therapy upon length of stay in a neurological rehabilitation setting. J Rehabil Med. 2002;34:260–6.

    Article  Google Scholar 

  19. 19.

    Vandenbroucke JP, von Elm E, Altman DG, Gøtzsche PC, Mulrow CD, Pocock SJ, et al. Strengthening the Reporting of Observational Studies in Epidemiology (STROBE): explanation and elaboration. PLoS Med. 2007;4:e297.

    Article  Google Scholar 

  20. 20.

    Cuschieri S. The STROBE guidelines. Saudi J Anaesth. 2019;13:S31–4.

    Article  Google Scholar 

  21. 21.

    Dhillon JK, Shi J, Janezic A, Wheeler KK, Xiang H, Leonard JC. U.S. estimates of pediatric spinal cord injury: implications for clinical care and research planning. J Neurotrauma. 2017;34:2019–26.

    Article  Google Scholar 

  22. 22.

    Potoka DA, Schall LC, Ford HR. Development of a novel age-specific pediatric trauma score. J Pediatr Surg. 2001;36:106–12.

    CAS  Article  Google Scholar 

  23. 23.

    Oyetunji TA, Haider AH, Downing SR, Bolorunduro OB, Efron DT, Haut ER, et al. Treatment outcomes of injured children at adult level 1 trauma centers: are there benefits from added specialized care? Am J Surg. 2011;201:445–9.

    Article  Google Scholar 

  24. 24.

    McCarthy A, Curtis K, Holland AJ. Paediatric trauma systems and their impact on the health outcomes of severely injured children: an integrative review. Injury. 2016;47:574–85.

    Article  Google Scholar 

  25. 25.

    Choi BC, Pak AW. Multidisciplinarity, interdisciplinarity and transdisciplinarity in health research, services, education and policy: 1. Definitions, objectives, and evidence of effectiveness. Clin Invest Med. 2006;29:351–64.

    PubMed  Google Scholar 

  26. 26.

    Bakketun T, Gilhus NE, Rekand T. Myelomeningocele: need for long-time complex follow-up-an observational study. Scoliosis Spinal Disord. 2019;14:3.

    Article  Google Scholar 

  27. 27.

    Dryden DM, Saunders LD, Rowe BH, May LA, Yiannakoulias N, Svenson LW, et al. Utilization of health services following spinal cord injury: a 6-year follow-up study. Spinal Cord. 2004;42:513–25.

    CAS  Article  Google Scholar 

  28. 28.

    Zebracki K, Chlan K, Vogel LC. Long-term outcomes of pediatric-onset spinal cord injury. In: Vogel LC, Zebracki K, Betz RR, Mulcahey MJ (eds). Spinal cord injury in the child and young adult (Mac Keith Press, London, 2014) pp. 359–75.

  29. 29.

    Jarvers JS, Herren C, Jung MK, Blume C, Meinig H, Ruf M, et al. Pediatric spine trauma-Results of a German national multicenter study including 367 patients. Unfallchirurg. 2020;123:280–8.

    Article  Google Scholar 

  30. 30.

    Nadarajah V, Jauregui JJ, Perfetti D, Shasti M, Koh EY, Henn RF 3rd. What are the trends and demographics in sports-related pediatric spinal cord injuries? Phys Sportsmed. 2018;46:8–13.

    Article  Google Scholar 

  31. 31.

    Bilston LE, Brown J. Pediatric spinal injury type and severity are age and mechanism dependent. Spine. 2007;32:2339–47.

    Article  Google Scholar 

  32. 32.

    Vitale MG, Goss JM, Matsumoto H, Roye DP Jr. Epidemiology of pediatric spinal cord injury in the United States: years 1997 and 2000. J Pediatr Orthop. 2006;26:745–9.

    Article  Google Scholar 

  33. 33.

    Tong AN, Zhang JW, Zhou HJ, Tang HH, Bai JZ, Wang FY, et al. Ischemic damage may play an important role in spinal cord injury during dancing. Spinal Cord. 2020;58:1310–6.

    Article  Google Scholar 

Download references

Acknowledgements

The authors wish to acknowledge Per-Ola Rike and Kirsti Riiser for their contribution to the study. Special thanks to the following for valuable support: Einar Magnus Strand, Li Jian Jun, Steven Flanegan, Edmund Shehadeh, Arkadi Rutgayzer, Amichai Brezner and Ofer Keren.

Funding

The study has received research grant funding after competitive peer review from the following sources: The South-Eastern Norway Regional Health Authority, The Ministry of Health and Care Services in Norway (HOD), Sunnaas Rehabilitation Hospital, and the participating units. The funding agencies did not influence the study design, data analysis or interpretation.

Author information

Affiliations

Authors

Contributions

KSR, SS, VJ and JKS substantially contributed to the conception of the study. KSR, SS, VJ, WH, MA and JKS contributed to development of the study design. All authors critically revised the data collection instrument. KSR and SS led the data collection. WH and KSR prepared the manuscript and led the data analysis. WH, KSR, SS, VJ, MA and JKS substantially contributed to data interpretation and manuscript revision. All authors participated in critically revising the manuscript and have read and approved the final manuscript.

Corresponding author

Correspondence to Wiebke Höfers.

Ethics declarations

Competing interests

The authors declare no competing interests.

Ethical approval

Ethical approval was obtained from local ethical committees for all the participating clinics and from the Regional Ethics Committee of Health South-East Norway (2017/1867; 21. December 2017, 3. April 2019, 26. May 2020) for this project. The study is registered in ClinGovTrials.gov, 12 June 2018, NCT04117854.

Additional information

Publisher’s note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary information

Rights and permissions

Reprints and Permissions

About this article

Verify currency and authenticity via CrossMark

Cite this article

Höfers, W., Jørgensen, V., Sällström, S. et al. 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). https://doi.org/10.1038/s41393-021-00726-1

Download citation

Search

Quick links