Ríos-León Marta, Onal Bashak, Arango-Lasprilla Juan Carlos, Augutis Marika, Graham Allison, Kelly Erin Hayes, Kontaxakis Antonis, López-Dolado Elisa, Scheel-Sailer Anke, Valiullina Svetlana, Taylor Julian
Sensorimotor Function Group, Hospital Nacional de Parapléjicos (SESCAM), 45071 Toledo, Spain.
Instituto de Investigación Sanitaria de Castilla-La Mancha (IDISCAM), 45071 Toledo, Spain.
Children (Basel). 2024 Nov 23;11(12):1415. doi: 10.3390/children11121415.
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&H) domain overall priorities of European youth with SCI and their parents and caregivers (P&C).
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&C (n = 101), were included. Overall priorities were calculated based on unhappiness, importance, and research.
The sample included youth aged 8-12 years (30.7%) and 13-25 years (69.3%; 38.6% 13-17-year-olds and 30.7% youth aged 18-25 years), in addition to their P&C. The top three L&H priorities highlighted by P&C of the youth aged 8-12 years were "bladder" function (78%), "leg/foot movement" (77%), or "bowel" function (74%), compared with "leg/foot movement" (79%), "sit-to-stand" (76%), or "walking/ability to move" (75%) reported by P&C of the youth aged 13-25 years. The youth aged 13-25 years considered "leg/foot movement" (68%), "bowel" (66%), or "bladder" function (65%) as priorities. The top 10 priorities highlighted by the youth aged 13-25 years compared to the top 10 priorities rated by P&C were issues related to "personal needs". Nevertheless, "pressure injuries", "pain", "bowel function", or "mobility in the community" were highlighted as top preferences of priorities for the youth aged 13-25 years compared to their P&C.
Adolescents/young adults highlighted health domain priorities compared with their P&C, who equally considered L&H domains. Life domains, which were previously unaddressed, were highlighted by P&C, including "adulthood expectations" and "parenthood expectations". This survey will promote the involvement of stakeholders for comprehensive rehabilitation management for this population.
背景/目的：国际儿童期脊髓损伤（SCI）人群的总体优先事项尚不清楚。目的是描述和比较欧洲脊髓损伤青年及其父母和照料者（P&C）在生活与健康（L&H）领域的总体优先事项。
由PEPSCI合作组织编制的一项横断面设计调查在六个欧洲国家开展。总共纳入了202名参与者，包括脊髓损伤青年（n = 101）及其P&C（n = 101）。总体优先事项基于不幸福感、重要性和研究来计算。
样本包括8至12岁的青年（30.7%）和13至25岁的青年（69.3%；13至17岁的青年占38.6%，18至25岁的青年占30.7%），以及他们的P&C。8至1112岁青年的P&C强调的L&H领域前三大优先事项是“膀胱”功能（78%）、“腿部/足部活动”（77%）或“肠道”功能（74%），而13至25岁青年的P&C报告的是“腿部/足部活动”（79%）、“从坐到站”（76%）或“行走/移动能力”（75%）。13至25岁的青年将“腿部/足部活动”（68%）、“肠道”（66%）或“膀胱”功能（65%）视为优先事项。与P&C评定的前10大优先事项相比，13至25岁青年强调的前10大优先事项是与“个人需求”相关的问题。然而，与他们的P&C相比，“压疮”、“疼痛”、“肠道功能”或“社区活动能力”被13至25岁青年列为优先事项的首选。
与他们的P&C相比，青少年/青年成人更强调健康领域的优先事项，而P&C则同等重视L&H领域。P&C强调了之前未涉及的生活领域，包括“成年期望”和“为人父母的期望”。这项调查将促进利益相关者参与对该人群的全面康复管理。
