Neurodisability and Rehabilitation, Murdoch Children's Research Institute, Parkville, Victoria, Australia.
Department of Medicine, University of Melbourne, Melbourne, Victoria, Australia.
J Spinal Cord Med. 2024 Jul;47(4):495-503. doi: 10.1080/10790268.2022.2115513. Epub 2022 Sep 6.
CONTEXT/OBJECTIVE: Pediatric spinal cord disorders (SCD) are rare, and epidemiological data available to support treatment are lacking. The implementation of a national data register tailored to this population would greatly assist clinicians and therapists in guiding clinical practice. This study gathered perspectives surrounding a prospective national pediatric spinal cord disorder register.
Survey and modified Delphi technique.
Australia.
SCD consumers, health professionals, and researchers.
None.
None.
Purposive sampling recruited 6 consumers and 52 health professionals and researchers working in the field of SCD to participate. The consumer survey contained items including demographic information, general and pediatric-specific SCD health issues, and questions regarding activity and participation. The modified Delphi survey required health professionals and researchers to identify which "collection items" and "administrative features" should be included in a national SCD register for both clinical and research purposes. Seventeen essential and nine optional items, two outcome measures, data collection methods, consumer access, definition of "pediatric," and use of International Data Standards were included in the consensus for a minimum dataset.
This study developed a minimum dataset that could inform an Australian register for pediatric SCD. A register linking to an adult database is recommended to ensure coverage across the lifespan. While items for a minimum dataset have been recommended, this dataset is large. Review and refinement of this list are recommended to ensure the register is not overly time-consuming for practical use.
背景/目的：儿科脊髓疾病（SCD）较为罕见，目前缺乏可用于支持治疗的流行病学数据。建立一个专门针对该人群的国家数据登记处将极大地帮助临床医生和治疗师指导临床实践。本研究收集了关于前瞻性国家儿科脊髓疾病登记处的观点。
调查和改良 Delphi 技术。
澳大利亚。
SCD 患者、卫生专业人员和研究人员。
无。
无。
采用目的性抽样方法招募了 6 名患者和 52 名从事 SCD 领域工作的卫生专业人员和研究人员参与研究。患者调查包含了人口统计学信息、一般和儿科特定的 SCD 健康问题以及与活动和参与相关的问题。改良 Delphi 调查要求卫生专业人员和研究人员为临床和研究目的确定应在国家 SCD 登记处中包含哪些“收集项目”和“管理功能”。在共识中包含了 17 项基本项目和 9 项可选项目、两项结果测量指标、数据收集方法、患者访问、“儿科”的定义以及国际数据标准的使用。
本研究制定了一个最小数据集，可为澳大利亚儿科 SCD 登记处提供信息。建议建立一个与成人数据库相链接的登记处，以确保在整个生命周期内的覆盖范围。虽然已经推荐了最小数据集的项目，但该数据集仍然较大。建议对该列表进行审查和完善，以确保登记处不会因实际使用而过于耗时。
