Macquarie Business School, Macquarie University, Sydney, New South Wales, Australia
Australasian Rehabilitation Outcomes Centre (AROC), University of Wollongong, Wollongong, New South Wales, Australia.
BMJ Open. 2024 Aug 19;14(8):e082802. doi: 10.1136/bmjopen-2023-082802.
Traumatic brain injury (TBI) and spinal cord injury (SCI) are both major contributors to permanent disability globally, with an estimated 27 million new cases of TBI and 0.93 million new cases of SCI globally in 2016. In Australia, the National Disability Insurance Scheme (NDIS) provides support to people with disability. Reports from the NDIS suggest that the cost of support for people with TBI and SCI has been increasing dramatically, and there is a lack of independent analysis of the drivers of these increases. This data linkage seeks to better understand the participant transition between rehabilitation hospitals and the NDIS and the correlation between functional independence in rehabilitation and resource allocation in the NDIS.
This is a retrospective, population-based cohort study using Australia-wide NDIS participant data and rehabilitation hospital episode data. The linked dataset provides a comparison of functional independence against which to compare the NDIS resource allocation to people with TBI and SCI. This protocol outlines the secure and separated data linkage approach employed in linking partially identified episode data from the Australasian Rehabilitation Outcomes Centre (AROC) with identified participant data from the NDIS. The linkage employs a stepwise deterministic linkage approach. Statistical analysis of the linked dataset will consider the relationship between the functional independence measure score from the rehabilitation hospital and the committed funding supports in the NDIS plan. This protocol sets the foundation for an ongoing data linkage between rehabilitation hospitals and the NDIS to assist transition to the NDIS.
Ethics approval is from the Macquarie University Human Research Ethics Committee. AROC Data Governance Committee and NDIS Data Management Committee have approved this project. Research findings will be disseminated to key stakeholders through peer-reviewed publications in scientific journals and presentations to clinical and policy audiences via AROC and NDIS.
创伤性脑损伤（TBI）和脊髓损伤（SCI）在全球范围内都是导致永久性残疾的主要原因，据估计，2016 年全球有 2700 万例新的 TBI 病例和 93 万例新的 SCI 病例。在澳大利亚，国家残疾保险计划（NDIS）为残疾人士提供支持。NDIS 的报告表明，TBI 和 SCI 患者的支持成本一直在大幅增加，但对这些增长的驱动因素缺乏独立分析。这项数据链接旨在更好地了解康复医院和 NDIS 之间的参与者过渡情况，以及康复中的功能独立性与 NDIS 中的资源分配之间的相关性。
这是一项回顾性、基于人群的队列研究，使用澳大利亚全国 NDIS 参与者数据和康复医院住院数据。该链接数据集提供了一个功能独立性的比较，以便比较 TBI 和 SCI 患者的 NDIS 资源分配。本方案概述了链接部分识别的事件数据从澳大利亚康复成果中心（AROC）与从 NDIS 中识别的参与者数据的安全和分离的数据链接方法。该链接采用逐步确定性链接方法。对链接数据集的统计分析将考虑康复医院的功能独立性测量分数与 NDIS 计划中承诺的资金支持之间的关系。本方案为康复医院和 NDIS 之间正在进行的数据链接奠定了基础，以协助向 NDIS 的过渡。
伦理批准来自麦考瑞大学人类研究伦理委员会。AROC 数据治理委员会和 NDIS 数据管理委员会已批准该项目。研究结果将通过在科学期刊上发表同行评议的出版物以及通过 AROC 和 NDIS 向临床和政策受众介绍，向主要利益攸关方传播。
