Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2024 Jan;47(1):155-167.
doi: 10.1080/10790268.2022.2087140. Epub 2022 Jul 1.

Pediatric health and life domain priorities: A national survey of people with spinal cord injury and their parents and caregivers

Marta Ríos-León  1 , Bashak Onal  2 , Juan Carlos Arango-Lasprilla  3   4   5 , Marika Augutis  6 , Nora Civicos-Sanchez  7 , Allison Graham  8 , Erin Hayes Kelly  9 , Elisa López-Dolado  10 , Anke Scheel-Sailer  11   12 , Patricia Subiñas-Medina  13 ; PEPSCI Collaboration; Julian Taylor  1   14
Affiliations

Pediatric health and life domain priorities: A national survey of people with spinal cord injury and their parents and caregivers

Marta Ríos-León et al. J Spinal Cord Med. 2024 Jan.

Abstract

Context/objective: No information is available regarding priorities for pediatric-onset spinal cord injury (SCI). This study described the Health and Life (H&L) domain priorities of youth with pediatric-onset SCI and their parents/caregivers living in Spain.

Design: A cross-sectional survey.

Setting: Two SCI rehabilitation centers.

Participants: Sixty participants, youth with pediatric-onset SCI (n = 26) and parents/caregivers (n = 34).

Interventions: Not applicable.

Outcome measures: Median overall priorities calculated on the basis of importance, unhappiness, and research measured with a new survey of pediatric H&L domains and rated using a 5-point Likert Scale.

Results: A total of 60 surveys were received providing information on 35 individuals with SCI: 2-7-year-olds (25.7%), 8-12-year-olds (22.9%), 13-17-year-olds (31.4%), and 18-25-year-olds (20.0%). The top three overall H&L priorities reported by parents/caregivers of 2-12-year-olds were "parenthood expectations" (84%), "leg/foot movement" (83%), and "bladder" function (83%), compared to "dressing/undressing" (78%), "walking/ability to move" (77%) and "bladder" function (77%) rated for 13-25-year-olds. "Sit-to-stand" (79%), "leg/foot movement" (78%) and "arm/hand movement" (77%) were reported as priorities by 13-25-year-olds. The 13-25-year-olds highlighted "sit-to-stand" (100%), "eating/drinking" (54%), and "physical function" (94%) as their top unhappiness, importance, and research priorities, respectively. Significant differences between tetraplegia and paraplegia were found in "mobility in the community" (unhappiness item) for 13-25-years-old.

Conclusion: Health domains were considered the top overall H&L priorities by parents/caregivers of 13-25-year-olds, compared to life domains reported for their 2-12-year-olds. This survey will aid rehabilitation professionals to engage stakeholders to implement a comprehensive SCI management program for the pediatric population.

Keywords: Adolescent; Child; Life and health priorities; Rehabilitation; Spinal cord injuries.

PubMed Disclaimer

Figures

Figure 1
Figure 1
Educational background of participants with SCI and their parents/caregivers.
Figure 2
Figure 2
Overall percentage of importance, unhappiness, and research for life and health domain items reported by participants with SCI aged 13–25 years.
Figure 3
Figure 3
Schematic of the top H&L domain importance, unhappiness, and research priority for different youth age ranges and participant groups. Common priorities for individuals with SCI and their parents/caregivers are marked with an asterisk.
Figure 4
Figure 4
Summary of the top three overall health and life priorities reported by participants with SCI and their parents/caregivers. The top overall H&L priority for 2-12-year-olds and 13-25-year-olds reported by their parents/caregivers, and the top overall H&L priority as reported by 13-25-year-olds themselves are marked with an asterisk. The top 10 H&L pediatric-onset SCI priorities unaddressed by Simpson et al. (2012) are marked in upper case.
See this image and copyright information in PMC

References

    1. Aaby A, Ravn SL, Kasch H, Andersen TE.. The associations of acceptance with quality of life and mental health following spinal cord injury: a systematic review. Spinal Cord 2020;58:130–148. doi:10.1038/s41393-019-0379-9. Cited in: PMID: 31719667. - DOI - PubMed
    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;57:183–197. doi:10.1038/s41393-018-0209-5. Cited in: PMID: 30552413. - DOI - PubMed
    1. van den Berg ME, Castellote JM, Mahillo-Fernandez I, de Pedro-Cuesta J.. Incidence of nontraumatic spinal cord injury: a Spanish cohort study (1972-2008). Arch Phys Med Rehabil 2012;93:325–331. doi:10.1016/j.apmr.2011.08.027. Cited in: PMID: 22289245. - DOI - PubMed
    1. Pérez K, Novoa AM, Santamariña-Rubio E, Narvaez Y, Arrufat V, Borrell C, et al. . Incidence trends of traumatic spinal cord injury and traumatic brain injury in Spain, 2000-2009. Accid Anal Prev 2012;46:37–44. doi:10.1016/j.aap.2011.12.004. Cited in: PMID: 22310041. - DOI - PubMed
    1. Canosa-Hermida E, Mora-Boga R, Cabrera-Sarmiento JJ, Ferreiro-Velasco ME, la Barrera S S-d, Rodríguez-Sotillo A, Montoto-Marqués A.. Epidemiology of traumatic spinal cord injury in childhood and adolescence in galicia. Spain: report of the last: 26-years. J Spinal Cord Med 2019;42:423–429. doi:10.1080/10790268.2017.1389836. Cited in: PMID: 29058557. - DOI - PMC - PubMed

Publication types