Research Priorities of the Pediatric Spinal Cord Injury Population: An International Insight for Rehabilitation Care

Marta Ríos-León; Bashak Onal; Juan Carlos Arango-Lasprilla; Marika Augutis; Allison Graham; Erin Hayes Kelly; Antonis Kontaxakis; Elisa López-Dolado; Anke Scheel-Sailer; Svetlana Valiullina; PEPSCI Collaboration; Julian Taylor

doi:10.1016/j.pediatrneurol.2023.11.010

Research Priorities of the Pediatric Spinal Cord Injury Population: An International Insight for Rehabilitation Care

Pediatr Neurol. 2024 Feb:151:121-130. doi: 10.1016/j.pediatrneurol.2023.11.010. Epub 2023 Dec 1.

Collaborators

PEPSCI Collaboration:
Juan Carlos Arango Lasprilla, Marika Augutis, Allison Graham, Antonis Kontaxakis, Elisa López Dolado, Bashak Onal, Marta Ríos León, Anke Scheel-Sailer, Julian Taylor, Svetlana Valiullina, Christina Anastasia Rapidi, Maria Pyrgeli, Zoi Dalivigka, Filomeni Armakola, Nora Civicos Sánchez, Jutta Köhler, Lawrence C Vogel, Kathy Zebracki, Aggeliki Stavrianou, Erin Kelly, Per Ertzgaard, Inge Eriks Hoogland, Munawar Mecci, Jessica Salvati, Carey Viala, Wunna Aung, Angelina Alekseeva, Maya Gaymanova, Irina Novoselova, Olga Popova, Karina Wright, Aheed E Osman, Joy Roy Chowdhury, Naveen Kumar, Emma Fosbrook, Jayne Edwards, Renata Hakova, Jiri Kriz, Pradeep Thumbikat, Han Yin, Ram Hariharan, Kidangalil Mathew, Angela Gall, Natasha Wallace, Kerstin Wahman, Martina Bendt, Kirsten Hart, Kevin Jones, Vida Mokri, Emily Whicher, Joost van Middendorp, Emily Mattacola, Ana María Escobar Corroto, Silvia Ceruelo-Abajo, Ana Onate Figueres

Affiliations

¹ Sensorimotor Function Group, Hospital Nacional de Parapléjicos (SESCAM), Toledo, Spain; Instituto de Investigación Sanitaria de Castilla-La Mancha (IDISCAM), Toledo, Spain. Electronic address: mriosl@sescam.jccm.es.
² NHS Buckinghamshire Clinical Commissioning Group, Aylesbury, UK.
³ Biocruces Bizkaia Health Research Institute, Barakaldo, Spain; Department of Cell Biology and Histology, University of the Basque Country, Leioa, Spain; IKERBASQUE, Basque Foundation for Science, Bilbao, Spain.
⁴ Division of Neurogeriatrics, Department of Neurobiology, Care Sciences and Society, Karolinska Institutet, Stockholm, Sweden.
⁵ National Spinal Injuries Centre, Buckinghamshire Healthcare NHS Trust, Stoke Mandeville, UK.
⁶ American Academy of Pediatrics, Itasca, Illinois.
⁷ 414 Military Hospital for Special Diseases, Athens, Greece.
⁸ Rehabilitation Department, Hospital Nacional de Parapléjicos (SESCAM), Toledo, Spain.
⁹ Swiss Paraplegic Centre, Nottwil, Switzerland; Department of Health Science and Medicine, University of Lucerne, Lucerne, Switzerland.
¹⁰ Clinical and Research Institute of Emergency Pediatric Surgery and Trauma, Moscow, Russia.
¹¹ Sensorimotor Function Group, Hospital Nacional de Parapléjicos (SESCAM), Toledo, Spain; Instituto de Investigación Sanitaria de Castilla-La Mancha (IDISCAM), Toledo, Spain; Harris Manchester College, University of Oxford, Oxford, UK.

PMID: 38154239
DOI: 10.1016/j.pediatrneurol.2023.11.010

Abstract

Background: Although feedback from people with adult-onset spinal cord injury (SCI) has been considered for new rehabilitation programs, little is known about the priorities of the pediatric-onset SCI population. This study describes and compares health and life (H&L) domain research priorities of youth with pediatric-onset SCI and their parents/caregivers.

Methods: A cross-sectional survey, designed by the Pan-European Paediatric Spinal Cord Injury (PEPSCI) Collaboration, was performed at six European countries. Dyad data from 202 participants, youth with pediatric-onset SCI (n = 101) and their parents/caregivers (n = 101), were analyzed with the PEPSCI H&L domain surveys.

Results: The cohort was composed of 8 to 12-year-olds (30.7%), 13 to 17-year-olds (38.6%), and 18 to 25-year-olds (30.7%). The top three H&L domain research priorities reported by parents/caregivers of 8 to 12-year-olds were "walking/ability to move" (91%), "bladder" function (90%), and "general health/feel" (89%), compared with "physical function" (93%), "general health/feel" (90%), and "walking/ability to move" (89%) rated by parents/caregivers of 13 to 25-year-olds. "Bowel" function (85%), "leg/foot movement" (84%), and "bladder" function (84%) were reported as priorities by 13 to 25-year-olds, whereas "physical function" (84%), "experience at school" (83%), and "general mood" were highlighted by 8 to 12-year-olds. The top 10 priorities preferred by 13 to 25-year-olds when compared with the top 10 priorities reported by their parents/caregivers, included problems related to "bowel" and "pain."

Conclusions: Health domain research priorities were highlighted by 13 to 25-year-olds, compared with their parents/caregivers who equally identified H&L domains. This survey will aid health care and clinical research organizations to engage stakeholders to implement a comprehensive research strategy for the pediatric SCI population.

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

MeSH terms

Adolescent
Adult
Caregivers
Child
Cross-Sectional Studies
Humans
Research
Spinal Cord Injuries* / epidemiology
Spinal Cord Injuries* / rehabilitation
Walking