{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,10]],"date-time":"2026-07-10T03:21:30Z","timestamp":1783653690149,"version":"3.55.0"},"reference-count":31,"publisher":"MDPI AG","issue":"12","license":[{"start":{"date-parts":[[2024,11,23]],"date-time":"2024-11-23T00:00:00Z","timestamp":1732320000000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"name":"Stoke Mandeville Spinal Research","award":["1116574"],"award-info":[{"award-number":["1116574"]}]},{"name":"Stoke Mandeville Spinal Research","award":["1053113"],"award-info":[{"award-number":["1053113"]}]},{"name":"Stoke Mandeville Spinal Research","award":["2020"],"award-info":[{"award-number":["2020"]}]},{"name":"Stoke Mandeville Spinal Research","award":["PID2020-119948RB-I00"],"award-info":[{"award-number":["PID2020-119948RB-I00"]}]},{"name":"Buckinghamshire Healthcare NHS Trust (BHT) Charitable Funds","award":["1116574"],"award-info":[{"award-number":["1116574"]}]},{"name":"Buckinghamshire Healthcare NHS Trust (BHT) Charitable Funds","award":["1053113"],"award-info":[{"award-number":["1053113"]}]},{"name":"Buckinghamshire Healthcare NHS Trust (BHT) Charitable Funds","award":["2020"],"award-info":[{"award-number":["2020"]}]},{"name":"Buckinghamshire Healthcare NHS Trust (BHT) Charitable Funds","award":["PID2020-119948RB-I00"],"award-info":[{"award-number":["PID2020-119948RB-I00"]}]},{"name":"Norrbacka-Eugeniastiftelsen, ADESLAS-Mutua Madrile\u00f1a","award":["1116574"],"award-info":[{"award-number":["1116574"]}]},{"name":"Norrbacka-Eugeniastiftelsen, ADESLAS-Mutua Madrile\u00f1a","award":["1053113"],"award-info":[{"award-number":["1053113"]}]},{"name":"Norrbacka-Eugeniastiftelsen, ADESLAS-Mutua Madrile\u00f1a","award":["2020"],"award-info":[{"award-number":["2020"]}]},{"name":"Norrbacka-Eugeniastiftelsen, ADESLAS-Mutua Madrile\u00f1a","award":["PID2020-119948RB-I00"],"award-info":[{"award-number":["PID2020-119948RB-I00"]}]},{"name":"Alicia Koplowitz Foundation","award":["1116574"],"award-info":[{"award-number":["1116574"]}]},{"name":"Alicia Koplowitz Foundation","award":["1053113"],"award-info":[{"award-number":["1053113"]}]},{"name":"Alicia Koplowitz Foundation","award":["2020"],"award-info":[{"award-number":["2020"]}]},{"name":"Alicia Koplowitz Foundation","award":["PID2020-119948RB-I00"],"award-info":[{"award-number":["PID2020-119948RB-I00"]}]}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":["Children"],"abstract":"<jats:p>Background\/Objectives: Overall priorities of the international pediatric-onset spinal cord injury (SCI) population are unknown. The purpose was to describe and compare Life and Health (L&amp;H) domain overall priorities of European youth with SCI and their parents and caregivers (P&amp;C). Methods: A survey with a cross-sectional design, prepared by the PEPSCI Collaboration, was conducted in six European countries. In total, 202 participants, including youth with SCI (n = 101) and their P&amp;C (n = 101), were included. Overall priorities were calculated based on unhappiness, importance, and research. Results: The sample included youth aged 8\u201312 years (30.7%) and 13\u201325 years (69.3%; 38.6% 13\u201317-year-olds and 30.7% youth aged 18\u201325 years), in addition to their P&amp;C. The top three L&amp;H priorities highlighted by P&amp;C of the youth aged 8\u201312 years were \u201cbladder\u201d function (78%), \u201cleg\/foot movement\u201d (77%), or \u201cbowel\u201d function (74%), compared with \u201cleg\/foot movement\u201d (79%), \u201csit-to-stand\u201d (76%), or \u201cwalking\/ability to move\u201d (75%) reported by P&amp;C of the youth aged 13\u201325 years. The youth aged 13\u201325 years considered \u201cleg\/foot movement\u201d (68%), \u201cbowel\u201d (66%), or \u201cbladder\u201d function (65%) as priorities. The top 10 priorities highlighted by the youth aged 13\u201325 years compared to the top 10 priorities rated by P&amp;C were issues related to \u201cpersonal needs\u201d. Nevertheless, \u201cpressure injuries\u201d, \u201cpain\u201d, \u201cbowel function\u201d, or \u201cmobility in the community\u201d were highlighted as top preferences of priorities for the youth aged 13\u201325 years compared to their P&amp;C. Conclusions: Adolescents\/young adults highlighted health domain priorities compared with their P&amp;C, who equally considered L&amp;H domains. Life domains, which were previously unaddressed, were highlighted by P&amp;C, including \u201cadulthood expectations\u201d and \u201cparenthood expectations\u201d. This survey will promote the involvement of stakeholders for comprehensive rehabilitation management for this population.<\/jats:p>","DOI":"10.3390\/children11121415","type":"journal-article","created":{"date-parts":[[2024,11,25]],"date-time":"2024-11-25T03:59:01Z","timestamp":1732507141000},"page":"1415","update-policy":"https:\/\/doi.org\/10.3390\/mdpi_crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Priorities of the Pediatric Spinal Cord Injury Population: An International Study on Patient-Reported Outcome Measures"],"prefix":"10.3390","volume":"11","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-9110-139X","authenticated-orcid":false,"given":"Marta","family":"R\u00edos-Le\u00f3n","sequence":"first","affiliation":[{"name":"Sensorimotor Function Group, Hospital Nacional de Parapl\u00e9jicos (SESCAM), 45071 Toledo, Spain"},{"name":"Instituto de Investigaci\u00f3n Sanitaria de Castilla-La Mancha (IDISCAM), 45071 Toledo, Spain"},{"name":"International Spinal Cord Society Paediatric Special Interest Group (ISCoS PaedsSIG), Aylesbury HP21 8AL, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bashak","family":"Onal","sequence":"additional","affiliation":[{"name":"International Spinal Cord Society Paediatric Special Interest Group (ISCoS PaedsSIG), Aylesbury HP21 8AL, UK"},{"name":"NHS Buckinghamshire Clinical Commissioning Group, Aylesbury HP20 1UX, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Juan Carlos","family":"Arango-Lasprilla","sequence":"additional","affiliation":[{"name":"Biocruces Bizkaia Health Research Institute, 48903 Barakaldo, Spain"},{"name":"Department of Cell Biology and Histology, University of the Basque Country, 48940 Leioa, Spain"},{"name":"IKERBASQUE, Basque Foundation for Science, 48009 Bilbao, Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-9711-1756","authenticated-orcid":false,"given":"Marika","family":"Augutis","sequence":"additional","affiliation":[{"name":"International Spinal Cord Society Paediatric Special Interest Group (ISCoS PaedsSIG), Aylesbury HP21 8AL, UK"},{"name":"Department of Neurobiology, Care Sciences and Society, Division of Neurogeriatrics, Karolinska Institutet, 171 77 Stockholm, Sweden"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Allison","family":"Graham","sequence":"additional","affiliation":[{"name":"International Spinal Cord Society Paediatric Special Interest Group (ISCoS PaedsSIG), Aylesbury HP21 8AL, UK"},{"name":"National Spinal Injuries Centre, Buckinghamshire Healthcare NHS Trust, Stoke Mandeville, Aylesbury HP21 8AL, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Erin Hayes","family":"Kelly","sequence":"additional","affiliation":[{"name":"American Academy of Pediatrics, Itasca, IL 60143, USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Antonis","family":"Kontaxakis","sequence":"additional","affiliation":[{"name":"International Spinal Cord Society Paediatric Special Interest Group (ISCoS PaedsSIG), Aylesbury HP21 8AL, UK"},{"name":"414 Military Hospital for Special Diseases, 152 36 Athens, Greece"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Elisa","family":"L\u00f3pez-Dolado","sequence":"additional","affiliation":[{"name":"International Spinal Cord Society Paediatric Special Interest Group (ISCoS PaedsSIG), Aylesbury HP21 8AL, UK"},{"name":"Rehabilitation Department, Hospital Nacional de Parapl\u00e9jicos (SESCAM), 45004 Toledo, Spain"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3820-6664","authenticated-orcid":false,"given":"Anke","family":"Scheel-Sailer","sequence":"additional","affiliation":[{"name":"International Spinal Cord Society Paediatric Special Interest Group (ISCoS PaedsSIG), Aylesbury HP21 8AL, UK"},{"name":"Swiss Paraplegic Centre, 6207 Nottwil, Switzerland"},{"name":"Department of Health Science and Medicine, University of Lucerne, 6002 Lucerne, Switzerland"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Svetlana","family":"Valiullina","sequence":"additional","affiliation":[{"name":"Clinical and Research Institute of Emergency Pediatric Surgery and Trauma, 119180 Moscow, Russia"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"family":"PEPSCI Collaboration","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2553-2348","authenticated-orcid":false,"given":"Julian","family":"Taylor","sequence":"additional","affiliation":[{"name":"Sensorimotor Function Group, Hospital Nacional de Parapl\u00e9jicos (SESCAM), 45071 Toledo, Spain"},{"name":"Instituto de Investigaci\u00f3n Sanitaria de Castilla-La Mancha (IDISCAM), 45071 Toledo, Spain"},{"name":"International Spinal Cord Society Paediatric Special Interest Group (ISCoS PaedsSIG), Aylesbury HP21 8AL, UK"},{"name":"Harris Manchester College, University of Oxford, Oxford OX1 2JD, UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"1968","published-online":{"date-parts":[[2024,11,23]]},"reference":[{"key":"ref_1","first-page":"121","article-title":"Research priorities of the pediatric spinal cord injury population: An international insight for rehabilitation care","volume":"151","author":"Onal","year":"2023","journal-title":"Pediatr. 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Med."}],"container-title":["Children"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/www.mdpi.com\/2227-9067\/11\/12\/1415\/pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,10,10]],"date-time":"2025-10-10T16:37:59Z","timestamp":1760114279000},"score":1,"resource":{"primary":{"URL":"https:\/\/www.mdpi.com\/2227-9067\/11\/12\/1415"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,11,23]]},"references-count":31,"journal-issue":{"issue":"12","published-online":{"date-parts":[[2024,12]]}},"alternative-id":["children11121415"],"URL":"https:\/\/doi.org\/10.3390\/children11121415","relation":{},"ISSN":["2227-9067"],"issn-type":[{"value":"2227-9067","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,11,23]]}}}