School for Mental Health and Neuroscience (MHeNS), Faculty of Psychology and Neuroscience (FPN), Maastricht University, Maastricht, The Netherlands.
Limburg Brain Injury Centre, Maastricht, The Netherlands.
J Neurotrauma. 2024 Jan;41(1-2):123-134. doi: 10.1089/neu.2022.0474. Epub 2023 Oct 10.
Traumatic brain injury (TBI) is associated with a high social and financial burden due to persisting (severe) disabilities. The consequences of TBI after intensive care unit (ICU) admission are generally measured with global disability screeners such as the Glasgow Outcome Scale-Extended (GOSE), which may lack precision. To improve outcome measurement after brain injury, a comprehensive clinical outcome assessment tool called the Minimal Dataset for Acquired Brain Injury (MDS-ABI) was recently developed. The MDS-ABI covers 12 life domains (demographics, injury characteristics, comorbidity, cognitive functioning, emotional functioning, energy, mobility, self-care, communication, participation, social support, and quality of life), as well as informal caregiver capacity and strain. In this cross-sectional study, we used the MDS-ABI among formerly ICU admitted patients with TBI to explore the relationship between dichotomized severity of TBI and long-term outcome. Our objectives were to: 1) summarize demographics, clinical characteristics, and long-term outcomes of patients and their informal caregivers, and 2) compare differences between long-term outcomes in patients with mild-moderate TBI and severe TBI based on Glasgow Coma Scale (GCS) scores at admission. Participants were former patients of a Dutch university hospital (total = 52; mild-moderate TBI = 23; severe TBI = 29) and their informal caregivers ( = 45). Hospital records were evaluated, and the MDS-ABI was administered during a home visit. On average 3.2 years after their TBI, 62% of the patients were cognitively impaired, 62% reported elevated fatigue, and 69% experienced restrictions in ≥2 participation domains (most frequently work or education and going out). Informal caregivers generally felt competent to provide necessary care (81%), but 31% experienced a disproportionate caregiver burden. All but four patients lived at home independently, often together with their informal caregiver (81%). Although the mild-moderate TBI group and the severe TBI group had significantly different clinical trajectories, there were no persisting differences between the groups for patient or caregiver outcomes at follow-up. As a large proportion of the patients experienced long-lasting consequences beyond global disability or independent living, clinicians should implement a multi-domain outcome set such as the MDS-AB to follow up on their patients.
创伤性脑损伤（TBI）会导致严重残疾，从而给社会和经济带来沉重负担。重症监护病房（ICU）入院后的 TBI 后果通常用格拉斯哥结局量表扩展版（GOSE）等全球残疾筛查器来衡量，但可能缺乏准确性。为了改善脑损伤后的预后评估，最近开发了一种称为获得性脑损伤最小数据集（MDS-ABI）的全面临床预后评估工具。MDS-ABI 涵盖 12 个生命领域（人口统计学、损伤特征、合并症、认知功能、情绪功能、能量、移动能力、自我护理、沟通、参与、社会支持和生活质量），以及非正规护理人员的能力和压力。在这项横断面研究中，我们在曾因 TBI 而入住 ICU 的患者中使用 MDS-ABI，以探讨 TBI 严重程度的二分法与长期预后之间的关系。我们的目标是：1）总结患者及其非正规护理人员的人口统计学、临床特征和长期预后；2）根据入院时的格拉斯哥昏迷量表（GCS）评分，比较轻度-中度 TBI 和重度 TBI 患者的长期预后差异。参与者为荷兰一家大学医院的前患者（共 52 名；轻度-中度 TBI=23 名；重度 TBI=29 名）及其非正规护理人员（=45 名）。我们评估了医院记录，并在家庭访视中进行了 MDS-ABI 评估。在 TBI 发生后平均 3.2 年，62%的患者存在认知障碍，62%报告存在疲劳加重，69%在≥2个参与领域存在受限（最常见的是工作或教育以及外出）。非正规护理人员通常认为自己有能力提供必要的护理（81%），但 31%的人感到护理负担不成比例。除了四名患者外，所有患者都独立居住，通常与非正规护理人员一起居住（81%）。尽管轻度-中度 TBI 组和重度 TBI 组的临床轨迹有显著差异，但在随访时，两组患者或护理人员的结局均无持续差异。由于很大一部分患者存在超出全球残疾或独立生活的长期后果，临床医生应实施多领域结局评估工具，如 MDS-ABI，对患者进行随访。
