Radboud Institute for Health Sciences; Department of Primary and Community Care, Radboud University Medical Centre, Nijmegen, The Netherlands.
PZC Dordrecht, Dordrecht, The Netherlands.
BMC Neurol. 2021 Mar 22;21(1):133. doi: 10.1186/s12883-021-02158-z.
Prolonged disorders of consciousness (PDOC) are amongst the severest sequelae of acquired brain injury. Evidence regarding epidemiology and rehabilitation outcomes is scarce. These knowledge gaps and psychological distress in families of PDOC patients may complicate clinical decision-making. The complex PDOC care and associated moral dilemmas result in high workload in healthcare professionals. Since 2019, all PDOC patients in the Netherlands have access to intensive neurorehabilitation up to 2 years post-injury provided by one rehabilitation center and four specialized nursing homes. Systematic monitoring of quantitative rehabilitation data within this novel chain of care is done in a study called DOCTOR. The optimization of tailored PDOC care, however, demands a better understanding of the impact of PDOC on patients, their families and healthcare professionals and their views on rehabilitation outcomes, end-of-life decisions and quality of dying. The True Outcomes of PDOC (TOPDOC) study aims to gain insight in the qualitative outcomes of PDOC rehabilitation and impact of PDOC on patients, their families and healthcare professionals.
Nationwide multicenter prospective cohort study in the settings of early and prolonged intensive neurorehabilitation with a two-year follow-up period, involving three study populations: PDOC patients > 16 years, patients' family members and healthcare professionals involved in PDOC care. Families' and healthcare professionals' views on quality of rehabilitation outcomes, end-of-life decisions and dying will be qualitatively assessed using comprehensive questionnaires and in-depth interviews. Ethical dilemmas will be explored by studying moral deliberations. The impact of providing care to PDOC patients on healthcare professionals will be studied in focus groups.
To our knowledge, this is the first nationwide study exploring quality of outcomes, end-of-life decisions and dying in PDOC patients and the impact of PDOC in a novel chain of care spanning the first 24 months post-injury in specialized rehabilitation and nursing home settings. Newly acquired knowledge in TOPDOC concerning quality of outcomes in PDOC rehabilitation, ethical aspects and the impact of PDOC will enrich quantitative epidemiological knowledge and outcomes arising from DOCTOR. Together, these projects will contribute to the optimization of centralized PDOC care providing support to PDOC patients, families and healthcare professionals.
持续性意识障碍（PDOC）是获得性脑损伤最严重的后遗症之一。关于其流行病学和康复结果的证据很少。这些知识空白以及 PDOC 患者家属的心理困扰可能会使临床决策复杂化。复杂的 PDOC 护理以及相关的道德困境给医疗保健专业人员带来了高工作量。自 2019 年以来，荷兰所有 PDOC 患者都可以在受伤后 2 年内接受由一个康复中心和四个专门疗养院提供的强化神经康复治疗。在这项名为 DOCTOR 的新护理链中，正在对定量康复数据进行系统监测。然而，要优化量身定制的 PDOC 护理，需要更好地了解 PDOC 对患者、他们的家人和医疗保健专业人员的影响，以及他们对康复结果、临终决策和临终质量的看法。真实 PDOC 结局研究（TOPDOC）旨在深入了解 PDOC 康复的定性结局以及 PDOC 对患者、他们的家人和医疗保健专业人员的影响。
这是一项全国范围内的多中心前瞻性队列研究，在早期和长期强化神经康复的环境中进行，为期两年的随访期，涉及三个研究人群：＞16 岁的 PDOC 患者、参与 PDOC 护理的患者家属和医疗保健专业人员。使用综合问卷和深入访谈定性评估家庭和医疗保健专业人员对康复结果质量、临终决策和临终的看法。通过研究道德审议来探讨道德困境。将通过焦点小组研究为 PDOC 患者提供护理对医疗保健专业人员的影响。
据我们所知，这是第一项在专门的康复和疗养院环境中，在新型护理链的前 24 个月内，探讨 PDOC 患者的结局质量、临终决策和临终的全国性研究，也是探索 PDOC 在新型护理链中的影响的第一项全国性研究。TOPDOC 中关于 PDOC 康复质量、伦理方面和 PDOC 影响的新获得的知识将丰富来自 DOCTOR 的定量流行病学知识和结果。这些项目将共同为优化集中化 PDOC 护理提供支持，以帮助 PDOC 患者、家庭和医疗保健专业人员。
