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. 2022 Spring;28(2):91-110.
doi: 10.46292/sci21-00053. Epub 2022 Apr 12.

Health and LifeDomain ResearchPriorities in Children, Adolescents and Young Adults With Pediatric-Onset Spinal Cord Injury: A National Cross-Sectional Survey in England

Bashak Onal  1   2   3 , Marta Ríos León  4 , Marika Augutis  5 , Emily Mattacola  6 , Allison Graham  1 , Kirsten Hart  1 , Erin Kelly  7 , Anke Scheel-Sailer  8 ; PEPSCI Collaboration; Julian Taylor  1   2   4   9
Affiliations

Health and LifeDomain ResearchPriorities in Children, Adolescents and Young Adults With Pediatric-Onset Spinal Cord Injury: A National Cross-Sectional Survey in England

Bashak Onal et al. Top Spinal Cord Inj Rehabil. 2022 Spring.

Abstract

Background: Although feedback from people with adult-onset spinal cord injury (SCI) has been considered in developing research programs, little is known about pediatric-onset SCI priorities.

Objectives: To describe the health and life (H&L) domain research priorities of youth with pediatric-onset SCI living in England.

Methods: Youth with pediatric-onset SCI (≥6 months) were recruited from five English rehabilitation centers and invited with their parents/caregivers to complete the age-appropriate surveys designed by the Pan-European Paediatric Spinal Cord Injury (PEPSCI) collaboration.

Results: A total of 73 surveys were received (32 from participants with SCI and 41 from their parents/caregivers), providing information on 47 individuals with SCI: 2- to 7-year-olds (29.8%), 8- to 12-year-olds (19.2%), 13- to 17-year-olds (17.0%), and 18 to 25-year-olds (34.0%). The top three research priorities reported by parents/caregivers of 2- to 12-year-old and 13- to 25-year-olds were pain (81%/89%), physical function (91%/83%) and health care access (78%/78%). Eighty-nine percent of 8- to 12-year-olds emphasized schooling, peer relationships, and general mood as their research priorities. The top three research priorities for Health or Life domains reported by 13- to 25-year-olds included spasms (95%), pain (91%), pressure injuries (91%), health care access (83%), physical function (78%), and daily personal needs (74%).

Conclusion: Although there should be an emphasis on addressing important life domain issues for 8- to 12-year-olds with SCI, adolescents and young adults mostly prioritized health domain research priorities in addition to health care access. This survey will aid health care and clinical research organizations to engage stakeholders to implement a comprehensive SCI research strategy in England for the pediatric population.

Keywords: adolescents; children; health and life domains; pediatric-onset spinal cord injury; research priorities; young adults.

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Figures

Figure 1.
Figure 1.
Educational background of participants with spinal cord injury (SCI) and their parents/caregivers.
Figure 2.
Figure 2.
Importance rating of (A) life and (B) health domain research questions as reported by participants with spinal cord injury (SCI) aged 13 to 25 years and illustrated as cumulative ordinal percentage bars.
See this image and copyright information in PMC

References

    1. New PW, Lee BB, Cripps R, Vogel LC, Scheinberg A, Waugh MC. Global mapping for the epidemiology of paediatric spinal cord damage: Towards a living data repository. Spinal Cord . 2019;57(3):183–197. doi: 10.1038/s41393-018-0209-5. - DOI - PubMed
    1. Martin BW, Dykes E, Lecky FE. Patterns and risks in spinal trauma. Arch Dis Child . 2004;89(9):860–865. doi: 10.1136/adc.2003.029223. - DOI - PMC - PubMed
    1. Sharpe AN, Forsyth R. Acute paediatric paraplegia: A case series review. Eur J Paediatr Neurol . 2013;17(6):620–624. doi: 10.1016/j.ejpn.2013.05.014. - DOI - PubMed
    1. Absoud M, Lim MJ, Chong WK et al. Paediatric acquired demyelinating syndromes: Incidence, clinical and magnetic resonance imaging features. Mult Scler . 2013;19(1):76–86. doi: 10.1177/1352458512445944. - DOI - PMC - PubMed
    1. Bergstrom EM, Short DJ, Frankel HL, Henderson NJ, Jones PR. The effect of childhood spinal cord injury on skeletal development: A retrospective study. Spinal Cord . 1999 Dec;37(12):838–846. - PubMed

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