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Background and Objective: The initial months of the Corona Virus 2019 (COVID-19) pandemic resulted in decreased hospitalizations. We aimed to describe differences in hospitalizations and related procedures across neurologic disease. Methods: In our retrospective observational study using the California State Inpatient Database and state-wide population-level estimates, we calculated neurologic hospitalization rates for a control period from January 2019 to February 2020 and a COVID-19 pandemic period from March to December 2020. We calculated incident rate ratios (IRR) for neurologic hospitalizations using negative binomial regression and compared relevant procedure rates over time. Results: Population-based neurologic hospitalization rates were 29.1 per 100,000 (95% CI 26.9-31.3) in April 2020 compared to 43.6 per 100,000 (95% CI 40.4-46.7) in January 2020. Overall, the pandemic period had 13% lower incidence of neurologic hospitalizations per month (IRR 0.87, 95% CI 0.86-0.89). The smallest decreases were in neurotrauma (IRR 0.92, 95% CI 0.89-0.95) and neuro-oncologic cases (IRR 0.93, 95% CI 0.87-0.99). Headache admissions experienced the greatest decline (IRR 0.62, 95% CI 0.58-0.66). For ischemic stroke, greater rates of endovascular thrombectomy (5.6% vs 5.0%; P < .001) were observed in the pandemic. Among all neurologic disease, greater rates of gastrostomy (4.0% vs 3.5%; P < .001), intubation/mechanical ventilation (14.3% vs 12.9%, P < .001), and tracheostomy (1.4 vs 1.2%; P < .001) were observed during the pandemic. Conclusions: During the first months of the COVID-19 pandemic there were fewer hospitalizations to varying degrees for all neurologic diagnoses. Rates of procedures indicating severe disease increased. Further study is needed to determine the impact on triage, patient outcomes, and cost consequences.
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Importance: Family members of patients with severe acute brain injury (SABI) are at risk for poor psychological outcomes. Objective: To explore the utility of the early use of a palliative care needs checklist in identifying care needs of patients with SABI and family members who are at risk of poor psychological outcomes. Design, Setting, and Participants: This prospective cohort study included patients with SABI in an intensive care unit (ICU) for 2 days or more and a Glasgow Coma Scale score of 12 or lower and their family members. This single-center study was conducted at an academic hospital in Seattle, Washington, from January 2018 to June 2021. Data were analyzed from July 2021 to July 2022. Exposure: At enrollment, a 4-item palliative care needs checklist was completed separately by clinicians and family members. Main Outcomes and Measures: A single family member for each enrolled patient completed questionnaires assessing symptoms of depression and anxiety, perception of goal-concordant care, and satisfaction in the ICU. Six months later, family members assessed their psychological symptoms, decisional regret, patient functional outcome, and patient quality of life (QOL). Results: A total of 209 patient-family member pairs (family member mean [SD] age, 51 [16] years; 133 women [64%]; 18 Asian [9%], 21 Black [10%], 20 [10%] Hispanic, and 153 White [73%] participants) were included. Patients had experienced stroke (126 [60%]), traumatic brain injury (62 [30%]), and hypoxic-ischemic encephalopathy (21 [10%]). At least 1 need was identified for 185 patients or their families (88%) by family members and 110 (53%) by clinicians (κ = -0.007; 52% agreement). Symptoms of at least moderate anxiety or depression were present in 50% of family members at enrollment (87 with anxiety and 94 with depression) and 20% at follow-up (33 with anxiety and 29 with depression). After adjustment for patient age, diagnosis, and disease severity and family race and ethnicity, clinician identification of any need was associated with greater goal discordance (203 participants; relative risk = 1.7 [95% CI, 1.2 to 2.5]) and family decisional regret (144 participants; difference in means, 17 [95% CI, 5 to 29] points). Family member identification of any need was associated with greater symptoms of depression at follow-up (150 participants; difference in means of Patient Health Questionnaire-2, 0.8 [95% CI, 0.2 to 1.3] points) and worse perceived patient QOL (78 participants; difference in means, -17.1 [95% CI, -33.6 to -0.5] points). Conclusions and Relevance: In this prospective cohort study of patients with SABI and their families, palliative care needs were common, although agreement on needs was poor between clinicians and family members. A palliative care needs checklist completed by clinicians and family members may improve communication and promote timely, targeted management of needs.
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Lesões Encefálicas , Cuidados Paliativos , Humanos , Feminino , Pessoa de Meia-Idade , Qualidade de Vida , Estudos Prospectivos , Lesões Encefálicas/epidemiologia , Lesões Encefálicas/terapia , Avaliação de Resultados em Cuidados de Saúde , Família/psicologiaRESUMO
Serious neurologic illnesses are associated with significant palliative care (PC) needs, including symptom management, complex decision-making, support for caregivers, and end-of-life care. While all neurologists are responsible for the provision of primary PC, there is an increasing need for trained neurologists with expertise in palliative medicine to manage refractory symptoms, mitigate conflict around goals of care, and provide specialized end-of-life care. This has led to the emergence of neuropalliative care (NPC) as a subspecialty. There are different ways to acquire PC skills, incorporate them into one's neurology practice, and develop a neuropalliative carer. We interviewed 3 leaders in the field of NPC, Dr. Robert Holloway, Dr. Jessica McFarlin, and Dr. Janis Miyasaki, who are all neurologists with different subspecialties and training pathways working in academic centers. They share their career paths, their advice for neurology trainees interested in pursuing a career in NPC, and their thoughts on the future of the field.
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Neurologia , Assistência Terminal , Humanos , Neurologia/educação , Neurologistas , Cuidados Paliativos , CuidadoresRESUMO
This Viewpoint advocates for the integration of neuropalliative care as a vital practice for supporting patients with neurological disease and their families.
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Cuidados Paliativos , HumanosRESUMO
Prognosticating is central to primary palliative care in neurology. Many neurologic diseases carry a high burden of troubling symptoms, and many individuals consider health states due to neurologic disease worse than death. Many patients and families report high levels of need for information at all disease stages, including information about prognosis. There are many barriers to communicating prognosis including prognostic uncertainty, lack of training and experience, fear of destroying hope, and not enough time. Developing the right mindset, tools, and skills can improve one's ability to formulate and communicate prognosis. Prognosticating is subject to many biases which can dramatically affect the quality of patient care; it is important for providers to recognize and reduce them. Patients and surrogates often do not hear what they are told, and even when they hear correctly, they form their own opinions. With practice and self-reflection, one can improve their prognostic skills, help patients and families create honest roadmaps of the future, and deliver high-quality person-centered care.
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Doenças do Sistema Nervoso , Neurologia , Humanos , Doenças do Sistema Nervoso/diagnóstico , Doenças do Sistema Nervoso/terapia , Cuidados Paliativos , PrognósticoRESUMO
Importance: Medicare beneficiaries with Alzheimer disease and related dementias (ADRD) are a particularly vulnerable group in whom arthritis is a frequently occurring comorbidity. Medicare's mandatory bundled payment reform-the Comprehensive Care for Joint Replacement (CJR) model-was intended to improve quality and reduce spending in beneficiaries undergoing joint replacement surgical procedures for arthritis. In the absence of adjustment for clinical risk, hospitals may avoid performing elective joint replacements for beneficiaries with ADRD. Objective: To evaluate the association of the CJR model with utilization of joint replacements for Medicare beneficiaries with ADRD. Design Setting and Participants: This cohort study used national Medicare data from 2013 to 2017 and multivariable linear probability models and a triple differences estimation approach. Medicare beneficiaries with a diagnosis of arthritis were identified from 67 metropolitan statistical areas (MSAs) mandated to participate in CJR and 104 control MSAs. Data were analyzed from July 2020 to July 2021. Exposures: Implementation of the CJR model in 2016. Main Outcomes and Measures: Outcomes were separate binary indicators for whether or not a beneficiary underwent hip or knee replacement. Key independent variables were the MSA group, before-CJR and after-CJR phase, ADRD diagnosis, and their interactions. The linear probability models controlled for beneficiary characteristics, MSA fixed effects, and time trends. Results: The study included 24 598 729 beneficiary-year observations for 9 624 461 unique beneficiaries, of which 250 168 beneficiaries underwent hip and 474 751 underwent knee replacements. The mean (SD) age of the 2013 cohort was 77.1 (7.9) years, 3 110 922 (66.4%) were women, 3 928 432 (83.8%) were non-Hispanic White, 792 707 (16.9%) were dually eligible for Medicaid, and 885 432 (18.9%) had an ADRD diagnosis. Before CJR implementation, joint replacement rates were lower among beneficiaries with ADRD (hip replacements: 0.38% vs 1.17% for beneficiaries with and without ADRD, respectively; P < .001; knee replacements: 0.70% vs 2.25%; P < .001). After controlling for relevant covariates, CJR was associated with a 0.07-percentage-point decline in hip replacements for beneficiaries with ADRD (95% CI, -0.13 to -0.001; P = .046) and a 0.07-percentage-point decline for beneficiaries without ADRD (95% CI, -0.12 to -0.02; P = .01) residing in CJR MSAs compared with beneficiaries in control MSAs. However, this change in hip replacement rates for beneficiaries with ADRD was not statistically significantly different from the change for beneficiaries without ADRD (percentage point difference: 0.01; 95% CI, -0.08 to 0.09; P = .88). No statistically significant changes in knee replacement rates were noted for beneficiaries with ADRD compared with those without ADRD with CJR implementation (percentage point difference: -0.03, 95% CI, -0.09 to 0.02; P = .27). Conclusions and Relevance: In this cohort study of Medicare beneficiaries with arthritis, the CJR model was not associated with a decline in joint replacement utilization among beneficiaries with ADRD compared with beneficiaries without ADRD in the first 2 years of the program, thereby alleviating patient selection concerns.
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Doença de Alzheimer , Artrite , Artroplastia de Quadril , Idoso , Doença de Alzheimer/cirurgia , Estudos de Coortes , Feminino , Humanos , Masculino , Medicare , Estados UnidosRESUMO
Importance: Perioperative strokes are a major cause of death and disability. There is limited information on which to base decisions for how long to delay elective nonneurologic, noncardiac surgery in patients with a history of stroke. Objective: To examine whether an association exists between the time elapsed since an ischemic stroke and the risk of recurrent stroke in older patients undergoing elective nonneurologic, noncardiac surgery. Design, Setting, and Participants: This cohort study used data from the 100% Medicare Provider Analysis and Review files, including the Master Beneficiary Summary File, between 2011 and 2018 and included elective nonneurologic, noncardiac surgeries in patients 66 years or older. Patients were excluded if they had more than 1 procedure during a 30-day period, were transferred from another hospital or facility, were missing information on race and ethnicity, were admitted in December 2018, or had tracheostomies or gastrostomies. Data were analyzed May 7 to October 23, 2021. Exposures: Time interval between a previous hospital admission for acute ischemic stroke and surgery. Main Outcomes and Measures: Acute ischemic stroke during the index surgical admission or rehospitalization for stroke within 30 days of surgery, 30-day all-cause mortality, composite of stroke and mortality, and discharge to a nursing home or skilled nursing facility. Multivariable logistic regression models were used to estimate adjusted odds ratios (AORs) to quantify the association between outcome and time since ischemic stroke. Results: The final cohort included 5â¯841â¯539 patients who underwent elective nonneurologic, noncardiac surgeries (mean [SD] age, 74.1 [6.1] years; 3 371 329 [57.7%] women), of which 54â¯033 (0.9%) had a previous stroke. Patients with a stroke within 30 days before surgery had higher adjusted odds of perioperative stroke (AOR, 8.02; 95% CI, 6.37-10.10; P < .001) compared with patients without a previous stroke. The adjusted odds of stroke were not significantly different at an interval of 61 to 90 days between previous stroke and surgery (AOR, 5.01; 95% CI, 4.00-6.29; P < .001) compared with 181 to 360 days (AOR, 4.76; 95% CI, 4.26-5.32; P < .001). The adjusted odds of 30-day all-cause mortality were higher in patients who underwent surgery within 30 days of a previous stroke (AOR, 2.51; 95% CI, 1.99-3.16; P < .001) compared with those without a history of stroke, and the AOR decreased to 1.49 (95% CI, 1.15-1.92; P < .001) at 61 to 90 days from previous stroke to surgery but did not decline significantly, even after an interval of 360 or more days. Conclusions and Relevance: The findings of this cohort study suggest that, among patients undergoing nonneurologic, noncardiac surgery, the risk of stroke and death leveled off when more than 90 days elapsed between a previous stroke and elective surgery. These findings suggest that the recent scientific statement by the American Heart Association to delay elective nonneurologic, noncardiac surgery for at least 6 months after a recent stroke may be too conservative.
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AVC Isquêmico , Acidente Vascular Cerebral , Idoso , Estudos de Coortes , Feminino , Humanos , Masculino , Medicare , Complicações Pós-Operatórias/epidemiologia , Estudos Retrospectivos , Fatores de Risco , Acidente Vascular Cerebral/epidemiologia , Acidente Vascular Cerebral/etiologia , Estados Unidos/epidemiologiaRESUMO
Perioperative stroke is a potentially devastating complication in patients undergoing noncardiac, nonneurological surgery. This scientific statement summarizes established risk factors for perioperative stroke, preoperative and intraoperative strategies to mitigate the risk of stroke, suggestions for postoperative assessments, and treatment approaches for minimizing permanent neurological dysfunction in patients who experience a perioperative stroke. The first section focuses on preoperative optimization, including the role of preoperative carotid revascularization in patients with high-grade carotid stenosis and delaying surgery in patients with recent strokes. The second section reviews intraoperative strategies to reduce the risk of stroke, focusing on blood pressure control, perioperative goal-directed therapy, blood transfusion, and anesthetic technique. Finally, this statement presents strategies for the evaluation and treatment of patients with suspected postoperative strokes and, in particular, highlights the value of rapid recognition of strokes and the early use of intravenous thrombolysis and mechanical embolectomy in appropriate patients.
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Período Perioperatório/métodos , Complicações Pós-Operatórias/cirurgia , Acidente Vascular Cerebral/etiologia , American Heart Association , Feminino , Humanos , Masculino , Doenças do Sistema Nervoso , Fatores de Risco , Acidente Vascular Cerebral/fisiopatologia , Estados UnidosAssuntos
Infecções por Coronavirus/terapia , Doenças do Sistema Nervoso/terapia , Neurologia/organização & administração , Cuidados Paliativos/organização & administração , Pneumonia Viral/terapia , Adulto , Planejamento Antecipado de Cuidados , Idoso , Idoso de 80 Anos ou mais , COVID-19 , Criança , Infecções por Coronavirus/complicações , Família , Humanos , Pacientes Internados , Doenças do Sistema Nervoso/complicações , Pandemias , Pneumonia Viral/complicações , Autocuidado , Telemedicina/organização & administração , Assistência TerminalRESUMO
A palliative approach to care is person-centered and aims to minimize overall disease burden among patients with serious illnesses. There is rising interest in the role of palliative care to improve quality of life among patients with Parkinson's disease (PD). While there is a clear indication for palliative care involvement in those with advanced disease, there is also increasing evidence for the role palliative care may play earlier in the course of PD. However, optimal methods for timing and implementation of these services remain unclear. Here, we aim to explore the palliative needs of individuals with PD from the time of diagnosis over the entire course of the illness. We discuss methods for delivering palliative care services including consultative specialty palliative care, neurologist or primary care-delivered palliative care (primary palliative care), and the emerging specialty of neuropalliative care. We also explore novel care delivery methods and their role in improving patient access to palliative services. We argue that primary palliative care is optimally positioned for the delivery of palliative care for the majority of patients with PD over the course of their illness and explore how and when palliative medicine or neuropalliative specialists can supplement this care. Finally, we describe gaps in our current understanding of outpatient palliative care delivery among the PD population including the development of better methods to identify the palliative needs of patients, the validation of novel care delivery mechanisms, and the need to enhance neurologists' and other medical providers' education in the provision of palliative care services.
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Necessidades e Demandas de Serviços de Saúde , Modelos de Enfermagem , Pacientes Ambulatoriais , Cuidados Paliativos , Doença de Parkinson/terapia , Humanos , Doença de Parkinson/enfermagemRESUMO
INTRODUCTION: The Common Data Elements (CDEs) initiative is a National Institute of Health/National Institute of Neurological Disorders and Stroke (NINDS) effort to standardize naming, definitions, data coding, and data collection for observational studies and clinical trials in major neurological disorders. A working group of experts was established to provide recommendations for Unruptured Aneurysms and Aneurysmal Subarachnoid Hemorrhage (SAH) CDEs. METHODS: This paper summarizes the recommendations of the Hospital Course and Acute Therapies after SAH working group. Consensus recommendations were developed by assessment of previously published CDEs for traumatic brain injury, stroke, and epilepsy. Unruptured aneurysm- and SAH-specific CDEs were also developed. CDEs were categorized into "core", "supplemental-highly recommended", "supplemental" and "exploratory". RESULTS: We identified and developed CDEs for Hospital Course and Acute Therapies after SAH, which included: surgical and procedure interventions; rescue therapy for delayed cerebral ischemia (DCI); neurological complications (i.e. DCI; hydrocephalus; rebleeding; seizures); intensive care unit therapies; prior and concomitant medications; electroencephalography; invasive brain monitoring; medical complications (cardiac dysfunction; pulmonary edema); palliative comfort care and end of life issues; discharge status. The CDEs can be found at the NINDS Web site that provides standardized naming, and definitions for each element, and also case report form templates, based on the CDEs. CONCLUSION: Most of the recommended Hospital Course and Acute Therapies CDEs have been newly developed. Adherence to these recommendations should facilitate data collection and data sharing in SAH research, which could improve the comparison of results across observational studies, clinical trials, and meta-analyses of individual patient data.
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Aneurisma Roto/terapia , Elementos de Dados Comuns , Hospitalização , Aneurisma Intracraniano/terapia , Hemorragia Subaracnóidea/terapia , Pesquisa Biomédica , Isquemia Encefálica , Eletroencefalografia , Humanos , Hidrocefalia , National Institute of Neurological Disorders and Stroke (USA) , National Library of Medicine (U.S.) , Procedimentos Neurocirúrgicos , Cuidados Paliativos , Alta do Paciente , Recidiva , Convulsões , Assistência Terminal , Estados UnidosRESUMO
Neuropalliative care is an emerging subspecialty in neurology and palliative care. On April 26, 2017, we convened a Neuropalliative Care Summit with national and international experts in the field to develop a clinical, educational, and research agenda to move the field forward. Clinical priorities included the need to develop and implement effective models to integrate palliative care into neurology and to develop and implement informative quality measures to evaluate and compare palliative approaches. Educational priorities included the need to improve the messaging of palliative care and to create standards for palliative care education for neurologists and neurology education for palliative specialists. Research priorities included the need to improve the evidence base across the entire research spectrum from early-stage interventional research to implementation science. Highest priority areas include focusing on outcomes important to patients and families, developing serious conversation triggers, and developing novel approaches to patient and family engagement, including improvements to decision quality. As we continue to make remarkable advances in the prevention, diagnosis, and treatment of neurologic illness, neurologists will face an increasing need to guide and support patients and families through complex choices involving immense uncertainty and intensely important outcomes of mind and body. This article outlines opportunities to improve the quality of care for all patients with neurologic illness and their families through a broad range of clinical, educational, and investigative efforts that include complex symptom management, communication skills, and models of care.
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Congressos como Assunto/tendências , Doenças do Sistema Nervoso/terapia , Neurologistas/tendências , Cuidados Paliativos/métodos , Cuidados Paliativos/tendências , Humanos , Doenças do Sistema Nervoso/diagnósticoRESUMO
Palliative medicine is a specialty that focuses on improving the quality of life for patients with serious or advanced medical conditions, and it is appropriate at any stage of disease, including at the time of diagnosis. Neurologic conditions tend to have high symptom burdens, variable disease courses, and poor prognoses that affect not only patients but also their families and caregivers. Patients with a variety of neurologic conditions such as Parkinson disease, dementia, amyotrophic lateral sclerosis, brain tumors, stroke, and acute neurologic illnesses have substantial unmet needs that can be addressed through a combination of primary and specialty palliative care. The complex needs of these patients are ideally managed with a comprehensive approach to care that addresses the physical, psychological, social, and spiritual aspects of care in an effort to reduce suffering. Early discussions about prognosis, goals of care, and advance care planning are critical as they can provide guidance for treatment decisions and allow patients to retain a sense of autonomy despite progressive cognitive or functional decline. With the rapid growth in palliative care across the United States, there are opportunities to improve the palliative care knowledge of neurology trainees, the delivery of palliative care to patients with neurologic disease by both neurologists and nonneurologists, and the research agenda for neuropalliative care.
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Doenças do Sistema Nervoso Central , Cuidados Paliativos , Qualidade de Vida , Doenças do Sistema Nervoso Central/diagnóstico , Doenças do Sistema Nervoso Central/fisiopatologia , Doenças do Sistema Nervoso Central/psicologia , Doenças do Sistema Nervoso Central/terapia , Humanos , Cuidados Paliativos/ética , Cuidados Paliativos/métodos , Cuidados Paliativos/psicologia , Planejamento de Assistência ao Paciente/ética , Planejamento de Assistência ao Paciente/organização & administração , PrognósticoRESUMO
BACKGROUND AND PURPOSE: Stroke guidelines recommend time-limited trials of nasogastric feeding prior to percutaneous endoscopic gastrostomy (PEG) tube placement. We sought to describe timing of PEG placement and identify factors associated with early PEG for acute ischemic stroke. METHODS: We designed a retrospective observational study to examine time to PEG for ischemic stroke admissions in the Nationwide Inpatient Sample, 2001 to 2011. We defined early PEG placement as 1 to 7 days from admission. Using multivariable regression analysis, we identified the effects of patient and hospital characteristics on PEG timing. RESULTS: We identified 34 623 admissions receiving a PEG from 2001 to 2011, 53% of which received the PEG 1 to 7 days from admission. Among hospitals placing ≥10 PEG tubes, median time to PEG for individual hospitals ranged from 3 days to over 3 weeks (interquartile range 6-8.5 days). Older adult age groups were associated with early PEG (≥85 years versus 18-54 years: adjusted odds ratio 1.68, 95% confidence interval 1.50-1.87). Those receiving a PEG and tracheostomy were more likely to receive the PEG beyond 7 days, and these patients were more often younger compared with PEG only recipients. Those admitted to high-volume hospitals were more likely to receive their PEG early (≥350 versus <150 hospitalizations; adjusted odds ratio 1.26, 95% confidence interval 1.17-1.35). CONCLUSIONS: More than half of the PEG recipients received their surgical feeding tube within 7 days of admission. The oldest old, who may benefit most from time-limited trials of nasogastric feeding for ≥2 to 3 weeks, were most likely to receive a PEG within 7 days.
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Isquemia Encefálica/terapia , Endoscopia Gastrointestinal/métodos , Gastrostomia/métodos , Admissão do Paciente , Acidente Vascular Cerebral/terapia , Adolescente , Adulto , Idoso , Idoso de 80 Anos ou mais , Isquemia Encefálica/diagnóstico , Isquemia Encefálica/epidemiologia , Nutrição Enteral/métodos , Feminino , Hospitalização , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Retrospectivos , Acidente Vascular Cerebral/diagnóstico , Acidente Vascular Cerebral/epidemiologia , Fatores de Tempo , Estados Unidos/epidemiologia , Adulto JovemRESUMO
BACKGROUND: American Society for Clinical Oncology (ASCO) quality measures for terminal cancers recommend early advance care planning and hospice at the end of life. We sought to evaluate adherence to 5 palliative care quality measures and explore associations with patient outcomes in glioblastoma. METHODS: This is a retrospective analysis of 117 deceased glioblastoma patients over 5 years. Records were reviewed to describe adherence to palliative care quality measures and patient outcomes. Data regarding emotional assessments, advance directives, palliative care consultation, chemotherapy administration, hospice, location of death, and overall survival were collected. RESULTS: Median overall survival was 12.9 months. By the second oncology visit, 22.2% (26/117) had an emotional assessment completed. Advance directives were documented for 52.1% (61/117) by the third neuro-oncology visit (30/61 health care proxy), yet 26.5% (31/117) did not have any advance directive before the last month of life. With regard to other ASCO quality measures, 36.8% (43/117) had a palliative care consult; 94.0% (110/117) did not receive chemotherapy in the last 14 days of life; 59.8% (70/117) enrolled in hospice >7 days before death; and 56.4% (66/117) died in a home setting. Patients who enrolled in hospice >7 days before death were 3.56 times more likely to die in a home setting than patients enrolled <7 days before death or with no hospice enrollment (P = .002, [OR 3.56; 95% CI, 1.57-8.04]). CONCLUSIONS: Late advance directive documentation, minimal early palliative care involvement, and the association of early hospice enrollment with death in a home setting underscore the need to improve care and better define palliative care quality measures in glioblastoma.
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OBJECTIVES: Patients admitted to the neurological or neurosurgical ICU are likely to have palliative care needs. The goals of this project are to encourage the ICU team to identify palliative care needs for patients and their families and potential ways to meet those needs. DESIGN: Quality improvement project using a parallel-group prospective cohort design. SETTING: Single neuro-ICU at a large, academic medical center. PATIENTS: All patients admitted to the neuro-ICU from September 1, 2013, to November 30, 2013. INTERVENTIONS: We developed a palliative care needs screening tool consisting of four questions: 1) Does the patient have distressing physical or psychological symptoms? 2) Are there specific support needs for patient or family? 3) Are treatment options matched with patient-centered goals? 4) Are there disagreements among teams and family? We implemented this daily screening tool on morning rounds for one of two neurocritical care services that alternate admitting days to a single neuro-ICU. We examined prevalence and nature of palliative care needs and actions to address those needs, comparing the services with and without screening. MEASUREMENTS AND MAIN RESULTS: Over the 3-month period, 130 patients were admitted to the service with screening and 132 patients to the service without screening. The two groups did not differ with regard to age, gender, Glasgow Coma Scale, or diagnosis. Palliative care needs were identified in 62% of screened patients (80/130). Needs were mainly social support (53%) and establishing goals of care (28%). Screening was associated with more documented family conferences (p = 0.019) and a trend toward more palliative care consultations (p = 0.056). CONCLUSIONS: We developed a brief palliative care needs screening tool that identified palliative care needs for 62% neuro-ICU patients. This tool was associated with actions to meet these needs, potentially improving care for patients and their families.
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Unidades de Terapia Intensiva/organização & administração , Avaliação das Necessidades/organização & administração , Doenças do Sistema Nervoso/terapia , Cuidados Paliativos/organização & administração , Adulto , Idoso , Feminino , Escala de Coma de Glasgow , Objetivos , Humanos , Masculino , Pessoa de Meia-Idade , Doenças do Sistema Nervoso/psicologia , Estudos Prospectivos , Apoio Social , Assistência Terminal/organização & administraçãoRESUMO
BACKGROUND: Desire for improvement in one's illness and having one's own doctor functioning as a researcher are thought to promote therapeutic misconception (TM), a phenomenon in which research subjects are said to conflate research with treatment. PURPOSE: To examine whether subjects' therapeutic motivation and own doctor functioning as researcher are associated with TM. METHODS: We interviewed 90 persons with advanced Parkinson's disease (PD) enrolled or intending to enrol in sham surgery controlled neurosurgical trials, using qualitative interviews. Subjects were compared by motivation (primarily therapeutic vs primarily altruistic or dually motivated by altruistic and therapeutic motivation), and by doctor status (own doctor as site investigator vs not) on the following: understanding of purpose of study; understanding of research procedures; perception of chance of direct benefit; and recollection and perceptions concerning the risks. RESULTS: 60% had primarily therapeutic motivation and 44% had their own doctor as the site investigator, but neither were generally associated with increased TM responses. Overall level of understanding of purpose and procedures of research were high. Subjects responded with generally high estimates of probability of direct benefit, but their rationales were personal and complex. The therapeutic-motivation group was more sensitive to risks. Five (5.6%) subjects provided incorrect answers to the question about purpose of research, and yet, showed excellent understanding of research procedures. CONCLUSIONS: In persons with PD involved in sham surgery clinical trials, being primarily motivated by desire for direct benefit to one's illness or having one's own doctor as the site investigator were not associated with greater TM responses.
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Motivação , Doença de Parkinson/cirurgia , Pesquisadores/ética , Sujeitos da Pesquisa , Mal-Entendido Terapêutico , Adulto , Idoso , Ensaios Clínicos como Assunto , Compreensão , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Pesquisa QualitativaRESUMO
BACKGROUND AND PURPOSE: Although racial/ethnic differences in care are pervasive in many areas of medicine, little is known whether intracerebral hemorrhage (ICH) care processes or outcomes differ by race/ethnicity. METHODS: We analyzed 123 623 patients with ICH (83 216 white, 22 147 black, 10 519 Hispanic, and 7741 Asian) hospitalized at 1199 Get With The Guidelines-Stroke hospitals between 2003 and 2012. Multivariable logistic regression with generalized estimating equation was used to evaluate the association among race, stroke performance measures, and in-hospital outcomes. RESULTS: Relative to white patients, black, Hispanic, and Asian patients were significantly younger, but more frequently had more severe stroke (median National Institutes of Health Stroke Scale, 9, 10, 10, and 11, respectively; P<0.001). After adjustment for both patient and hospital-level characteristics, black patients were more likely to receive deep venous thrombosis prophylaxis, rehabilitation assessment, dysphagia screening, and stroke education, but less likely to have door to computed tomographic time ≤25 minutes and smoking cessation counseling than whites. Both Hispanic and Asian patients had higher odds of dysphagia screening but lower odds of smoking cessation counseling. In-hospital all-cause mortality was lower for blacks (23.0%), Hispanics (22.8%), and Asians (25.3%) than for white patients (27.6%). After risk adjustment, all minority groups had lower odds of death, of receiving comfort measures only or of being discharged to hospice. In contrast, they were more likely to exceed the median length of stay when compared with white patients. CONCLUSIONS: Although individual quality indicators in ICH varied by race/ethnicity, black, Hispanic, and Asian patients with ICH had lower risk-adjusted in-hospital mortality than white patients with ICH.