Objective: To provide an update on palliative care needs specific to stroke and provide key points for clinicians and health care systems caring for patients with stroke and their families.
Methods: Members of the writing group were chosen to represent the multidisciplinary team of professionals who care for people who have had a stroke. Each member was assigned a topic within their area of expertise, reviewed the literature, and drafted content with a focus on the past decade to complement the 2014 American Heart Association scientific statement on palliative and end-of-life care in stroke.
In a prospective, remote natural history study of 277 individuals with (60) and genetically at risk for (217) Parkinson's disease (PD), we examined interest in the return of individual research results (IRRs) and compared characteristics of those who opted for versus against the return of IRRs. Most ( = 180, 65%) requested sharing of IRRs with either a primary care provider, neurologist, or themselves. Among individuals without PD, those who requested sharing of IRRs with a clinician reported more motor symptoms than those who did not request any sharing (mean (SD) 2.
View Article and Find Full Text PDFPersons hospitalized for neurologic illness face multidimensional care needs. They can benefit from a palliative care approach that focuses on quality of life for persons with serious illness. We describe neurology provider "skills" to help meet these palliative needs: assessing the patient as a whole; facilitating conversations with patients to connect prognosis to care preferences; navigating neurologic illness to prepare patients and care partners for the future; providing high-quality end-of-life care to promote peace in death; and addressing disparities in care delivery.
View Article and Find Full Text PDFThe rapidly accelerating translation of biomedical advances is leading to revolutionary therapies that are often inaccessible to historically marginalized populations. We identified and synthesized recent guidelines and statements to propose 7 strategies to integrate equity within translational research in neurology: (1) learn history; (2) learn about upstream forces; (3) diversify and liberate; (4) change narratives and adopt best communication practices; (5) study social drivers of health and lived experiences; (6) leverage health technologies; and (7) build, sustain, and lead culturally humble teams. We propose that equity should be a major goal of translational research, equally important as safety and efficacy.
View Article and Find Full Text PDFThe 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. 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.
View Article and Find Full Text PDFBackground: Acute stroke therapy and rehabilitation declined during the COVID-19 pandemic. We characterized changes in acute stroke disposition and readmissions during the pandemic.
Methods: We used the California State Inpatient Database in this retrospective observational study of ischemic and hemorrhagic stroke.
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.
Importance: The Medicare Bundled Payments for Care Improvement (BPCI) model 3 of 2013 holds participating skilled nursing facilities (SNFs) responsible for all episode costs. There is limited evidence regarding SNF-specific outcomes associated with BPCI.
Objective: To examine the association between SNF BPCI participation and patient outcomes and across-facility differences in these outcomes among Medicare beneficiaries undergoing lower extremity joint replacement (LEJR).
Medicare implemented Bundled Payments for Care Improvement (BPCI) Model 3 in 2013, in which participating skilled nursing facilities (SNFs) were accountable for episode costs. We performed comparative interrupted time series analyses to evaluate associations between SNF BPCI participation and nurse staffing levels, using Medicare claims, resident assessments, and facility-level and market-level files of 2010-2017. For persistent-participating SNFs, BPCI was associated with improved certified nursing assistant (CNA) staffing levels (differential change = .
View Article and Find Full Text PDFSerious 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.
View Article and Find Full Text PDFObjective: Patients with advanced directives or Medical Orders for Life-Sustaining Treatment (MOLST), including "Do Not Resuscitate" (DNR) and/or "Do Not Intubate" (DNI), may be candidates for procedural interventions when presenting with acute neurologic emergencies. Such interventions may limit morbidity and mortality, but typically they require MOLST reversal. We investigated outcomes of patients with MOLST reversal for treatment of neurologic emergencies.
View Article and Find Full Text PDFPrognosticating 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.
View Article and Find Full Text PDFBackground And Objectives: To recruit and characterize a national cohort of individuals who have a genetic variant ( G2019S) that increases risk of Parkinson disease (PD), assess participant satisfaction with a decentralized, remote research model, and evaluate interest in future clinical trials.
Methods: In partnership with 23andMe, Inc., a personal genetics company, G2019S carriers with and without PD were recruited to participate in an ongoing 36-month decentralized, remote natural history study.
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.
Despite increasing awareness of the importance of a palliative care approach to meet the needs of persons living with neurologic illness, residency and fellowship programs report meeting this educational need due to a limited pool of neuropalliative care educators and a lack of adequate educational resources. To meet this need, a group of experts in neuropalliative care and palliative medicine leveraged resources from the Education in Palliative and End-of-life Care (EPEC) program and the National Institutes of Nursing Research to create a library of modules addressing topics relevant for neurology trainees, palliative medicine fellows, and clinicians in practice. In this article, we describe the development and dissemination plan of the EPEC Neurology program, initial evidence of efficacy, and opportunities for neurology educators and health services researchers to use these resources.
View Article and Find Full Text PDFImportance: Model 3 of the Bundled Payments for Care Improvement (BPCI) is an alternative payment model in which an entity takes accountability for the episode costs. It is unclear how BPCI affected the overall skilled nursing facility (SNF) financial performance and the differences between facilities with differing racial/ethnic and socioeconomic status (SES) composition of the residents.
Objective: The objective of this study was to determine associations between BPCI participation and SNF finances and across-facility differences in SNF financial performance.
Background: Traditional in-person Parkinson's disease (PD) research studies are often slow to recruit and place unnecessary burden on participants. The ongoing COVID-19 pandemic has added new impetus to the development of new research models.
Objective: To compare recruitment processes and outcomes of three remote decentralized observational PD studies with video visits.