Sensorimotor Function Group, Hospital Nacional de Parapléjicos (SESCAM), Toledo, Spain.
NHS Buckinghamshire Clinical Commissioning Group, Aylesbury, UK.
J Spinal Cord Med. 2024 Jan;47(1):155-167. doi: 10.1080/10790268.2022.2087140. Epub 2022 Jul 1.
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.
A cross-sectional survey.
Two SCI rehabilitation centers.
Sixty participants, youth with pediatric-onset SCI (n = 26) and parents/caregivers (n = 34).
Not applicable.
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.
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.
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.
背景/目的：关于儿科发病的脊髓损伤（SCI）的优先事项，目前尚无信息。本研究描述了西班牙儿科发病 SCI 青年及其父母/照顾者的健康和生活（H&L）领域的优先事项。
横断面调查。
两个 SCI 康复中心。
60 名参与者，儿科发病 SCI 青年（n=26）和父母/照顾者（n=34）。
不适用。
共收到 60 份调查问卷，提供了 35 名 SCI 患者的信息：2-7 岁（25.7%），8-12 岁（22.9%），13-17 岁（31.4%）和 18-25 岁（20.0%）。父母/照顾者为 2-12 岁儿童报告的前三项总体 H&L 重点分别是“为人父母的期望”（84%）、“腿部/脚部运动”（83%）和“膀胱”功能（83%），而 13-25 岁的人则将“穿衣/脱衣”（78%）、“行走/移动能力”（77%）和“膀胱”功能（77%）评为重点。13-25 岁的人报告说，“坐站”（79%）、“腿部/脚部运动”（78%）和“手臂/手部运动”（77%）是他们的优先事项。13-25 岁的人强调“坐站”（100%）、“饮食”（54%）和“身体功能”（94%）是他们最不满意、最重要和最需要研究的领域。在 13-25 岁的人当中，四肢瘫痪和截瘫之间在“社区移动能力”（不满项目）方面存在显著差异。
父母/照顾者认为，13-25 岁儿童的健康领域是整体 H&L 首要重点，而 2-12 岁儿童则是生命领域。本调查将有助于康复专业人员与利益相关者合作，为儿科人群实施全面的 SCI 管理计划。
