Sensorimotor Function Group, Hospital Nacional de Parapléjicos (SESCAM), Toledo, Spain; Instituto de Investigación Sanitaria de Castilla-La Mancha (IDISCAM), Toledo, Spain.
NHS Buckinghamshire Clinical Commissioning Group, Aylesbury, UK.
Pediatr Neurol. 2024 Feb;151:121-130. doi: 10.1016/j.pediatrneurol.2023.11.010. Epub 2023 Dec 1.
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.
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.
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."
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.
尽管人们认为来自成人脊髓损伤（SCI）患者的反馈对于新的康复计划很重要，但对于儿科 SCI 患者的优先事项知之甚少。本研究描述并比较了患有儿科 SCI 的青年及其父母/照顾者的健康和生活（H&L）领域的研究重点。
本研究采用由泛欧小儿脊髓损伤（PEPSCI）合作组织设计的横断面调查，在六个欧洲国家进行。对来自 202 名参与者的双份数据（儿童 SCI 患者 101 名，其父母/照顾者 101 名）进行了分析，使用了 PEPSCI H&L 领域调查问卷。
该队列由 8 至 12 岁（30.7%）、13 至 17 岁（38.6%）和 18 至 25 岁（30.7%）的患者组成。8 至 12 岁儿童的父母/照顾者报告的前三项 H&L 领域研究重点是“行走/移动能力”（91%）、“膀胱”功能（90%）和“一般健康/感觉”（89%），而 13 至 25 岁儿童的父母/照顾者报告的前三项重点则是“身体功能”（93%）、“一般健康/感觉”（90%）和“行走/移动能力”（89%）。13 至 25 岁儿童报告的重点还包括“肠道”功能（85%）、“腿部/脚部运动”（84%）和“膀胱”功能（84%）。8 至 12 岁儿童强调的是“身体功能”（84%）、“学校经历”（83%）和“一般情绪”。13 至 25 岁儿童前 10 项重点与父母/照顾者报告的前 10 项重点相比，包括与“肠道”和“疼痛”相关的问题。
与同等关注 H&L 领域的父母/照顾者相比，13 至 25 岁儿童更强调健康领域的研究重点。本调查将有助于医疗保健和临床研究组织让利益相关者参与进来，为儿科 SCI 患者实施全面的研究策略。
