McKenzie Erica D, Bruno Veronica A, Fong Andrew, Cai Pin, Earp Madalene, Camicioli Richard M, de Kock Ingrid, Buttenschoen Daniela, Sinnarajah Aynharan, Miyasaki Janis
Department of Clinical Neurosciences (EDM, VAB), Cumming School of Medicine, University of Calgary, AB, Canada; Data & Analytics (AF), Alberta Health Services, Calgary, Canada; Clinical Workforce Planning (PC, ME), Alberta Health Services, Calgary, Canada; Division of Neurology (RMC, JM), Department of Medicine, Faculty of Medicine and Dentistry, University of Alberta, Edmonton, Canada; Department of Oncology (IK, DB), Faculty of Medicine and Dentistry, University of Alberta, Edmonton, Canada; and Department of Medicine (AS), School of Medicine, Queen's University, Kingston, Ontario Canada.
Neurol Clin Pract. 2022 Dec;12(6):388-396. doi: 10.1212/CPJ.0000000000200092.
Neurodegenerative movement disorders are rising in prevalence and are associated with high health care utilization. Generally, health care resources are disproportionately expended in the last year of life. Health care utilization by those with neurodegenerative movement disorders in the last year of life is not well-understood. The goal of this study was to assess the utilization of acute care in the last year of life among individuals with neurodegenerative movement disorders and determine whether outpatient neurology or palliative care affected acute care utilization and place of death.
We conducted a retrospective cross-sectional study including health system administrative data in Alberta, Canada, from 2011 to 2017. Administrative data were used to determine place of death and quantify emergency department (ED) visits, hospitalizations, intensive care unit admissions, and outpatient generalist and specialist visits. Diagnoses were classified by 10th revision of the International Classification of Diseases codes. Stata 16v was used for statistical analyses.
Among 1439 individuals (60% male), Parkinson disease (n = 1226), progressive supranuclear palsy (n = 78), multiple system atrophy (n = 47), and Huntington disease (n = 58) were the most common diagnoses. The most frequent place of death was in hospital (45.9%), followed by long-term care (36.3%), home (7.9%), and residential hospice (4.0%). Most (64.2%) had >1 ED visit, and 14.4% had >3 emergency department visits. Fifty-five percent had >1 hospitalization, and 23.3% spent >30 days in hospital. Few (2.6%) were admitted to ICU. Only 37.2% and 8.8% accessed outpatient neurologist and specialist palliative care services, respectively. Multivariate logistic regression found the odds of dying at home was higher for those who received outpatient palliative consultation (OR, 2.49, 95% confidence interval [CI], 1.48-4.21, < 0.001) and were with a longer duration of home care support (OR, 1.0007, 95% CI, 1.0004-1.0009, < 0.001).
There are high rates of in-hospital death and acute care utilization in the year before death among those with neurodegenerative movement disorders. Most did not access specialist palliative or neurologic care in the last year of life. Outpatient palliative care and home care services were associated with increased odds of dying at home. Our results indicate the need for further research into the causes, costs, and potential modifiers to inform public health planning.
神经退行性运动障碍的患病率正在上升，且与高医疗保健利用率相关。一般来说，医疗保健资源在生命的最后一年中分配不均。神经退行性运动障碍患者在生命最后一年的医疗保健利用情况尚不清楚。本研究的目的是评估神经退行性运动障碍患者在生命最后一年的急性护理利用情况，并确定门诊神经科或姑息治疗是否会影响急性护理利用情况和死亡地点。
我们进行了一项回顾性横断面研究，纳入了加拿大艾伯塔省2011年至2017年的卫生系统行政数据。行政数据用于确定死亡地点，并量化急诊就诊、住院、重症监护病房入院以及门诊全科医生和专科医生就诊情况。诊断依据国际疾病分类第10版代码进行分类。使用Stata 16v进行统计分析。
在1439名个体（60%为男性）中，帕金森病（n = 1226）、进行性核上性麻痹（n = 78）、多系统萎缩（n = 47）和亨廷顿病（n = 58）是最常见的诊断。最常见的死亡地点是医院（45.9%），其次是长期护理机构（36.3%）、家中（7.9%）和住院临终关怀机构（4.0%）。大多数（64.2%）有超过1次急诊就诊，14.4%有超过3次急诊就诊。55%有超过1次住院，23.3%住院时间超过30天。很少有人（2.6%）入住重症监护病房。分别只有37.2%和8.8%的患者接受了门诊神经科医生和专科姑息治疗服务。多因素逻辑回归发现，接受门诊姑息治疗咨询的患者在家中死亡的几率更高（比值比[OR]，2.49，95%置信区间[CI]，1.48 - 4.21，P < 0.001），且接受家庭护理支持时间较长的患者在家中死亡的几率也更高（OR，1.0007，95% CI，1.0004 - 1.0009，P < 0.001）。
神经退行性运动障碍患者在死亡前一年的院内死亡率和急性护理利用率较高。大多数患者在生命的最后一年未接受专科姑息治疗或神经科护理。门诊姑息治疗和家庭护理服务与在家中死亡的几率增加相关。我们的结果表明需要进一步研究其原因、成本和潜在调节因素，以为公共卫生规划提供信息。
