儿科健康和生活领域的优先事项：一项全国性调查，调查对象为脊髓损伤患者及其父母和照顾者。
Pediatric health and life domain priorities: A national survey of people with spinal cord injury and their parents and caregivers.
机构信息
Sensorimotor Function Group, Hospital Nacional de Parapléjicos (SESCAM), Toledo, Spain.
NHS Buckinghamshire Clinical Commissioning Group, Aylesbury, UK.
出版信息
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.
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.
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。
设计
横断面调查。
地点
两个 SCI 康复中心。
参与者
60 名参与者，儿科发病 SCI 青年（n=26）和父母/照顾者（n=34）。
干预措施
不适用。
结果
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。
结论
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。
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