Modeling and Optimizing Deep Brain Stimulation to Enhance Gait in Parkinson's Disease: Personalized Treatment with Neurophysiological Insights.

Although high-frequency deep brain stimulation (DBS) is effective at relieving many motor symptoms of Parkinson's disease (PD), its effects on gait can be variable and unpredictable. This is due to 1) a lack of standardized and robust metrics for gait assessment in PD patients, 2) the challenges of performing a thorough evaluation of all the stimulation parameters space that can alter gait, and 3) a lack of understanding for impacts of stimulation on the neurophysiological signatures of walking. In this study, our goal was to develop a data-driven approach to identify optimal, personalized DBS stimulation parameters to improve gait in PD patients and identify the neurophysiological signature of improved gait.

Patient and Family Outcomes of Community Neurologist Palliative Education and Telehealth Support in Parkinson Disease.

Importance: Parkinson disease and related disorders (PDRD) are the fastest growing neurodegenerative illness in terms of prevalence and mortality. As evidence builds to support palliative care (PC) for PDRD, studies are needed to guide implementation.

Objective: To determine whether PC training for neurologists and remote access to a PC team improves outcomes in patients with PDRD in community settings.

The "Surprise Question" for Prognostication in People With Parkinson's Disease and Related Disorders.

Context: Parkinson's disease and related disorders (PDRD) are fatal neurodegenerative disorders characterized by a fluctuating course that can complicate prognostication. The "surprise question" (SQ: "Would you be surprised if your patient died in the next year?") has been used to identify patients with limited prognosis but has not been assessed in PDRD.

Objectives: To determine the validity of the SQ in predicting 12-month mortality in PDRD.

Development and Dissemination of a Neurology Palliative Care Curriculum: Education in Palliative and End-of-Life Care Neurology.

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.

Prevalence and Cumulative Incidence of Caregiver-Reported Aggression in Advanced Parkinson Disease and Related Disorders.

Objective: To estimate the point prevalence and cumulative incidence of caregiver-reported aggressive behaviors among people living with advanced Parkinson disease and related disorders (PDRDs) and secondarily examine variables associated with aggression.

Methods: Caregivers from a clinical trial of outpatient palliative care for PDRD were surveyed about patient aggression at baseline and every 3 months over 12 months. Baseline responses were used for point prevalence.

Predictors of Spiritual Well-Being in Family Caregivers for Individuals with Parkinson's Disease.

Parkinson's disease (PD) is a common neurodegenerative illness that causes disability through both motor and nonmotor symptoms. Family caregivers provide substantial care to persons living with PD, often at great personal cost. While spiritual well-being and spirituality have been suggested to promote resiliency in caregivers of persons living with cancer and dementia, this issue has not been explored in PD.

Long-term wireless streaming of neural recordings for circuit discovery and adaptive stimulation in individuals with Parkinson's disease.

Neural recordings using invasive devices in humans can elucidate the circuits underlying brain disorders, but have so far been limited to short recordings from externalized brain leads in a hospital setting or from implanted sensing devices that provide only intermittent, brief streaming of time series data. Here, we report the use of an implantable two-way neural interface for wireless, multichannel streaming of field potentials in five individuals with Parkinson's disease (PD) for up to 15 months after implantation. Bilateral four-channel motor cortex and basal ganglia field potentials streamed at home for over 2,600 h were paired with behavioral data from wearable monitors for the neural decoding of states of inadequate or excessive movement.

The TOPAZ study: a home-based trial of zoledronic acid to prevent fractures in neurodegenerative parkinsonism.

The Trial of Parkinson's And Zoledronic acid (TOPAZ, https://clinicaltrials.gov/ct2/show/NCT03924414 ) is a unique collaboration between experts in movement disorders and osteoporosis to test the efficacy of zoledronic acid, an FDA-approved parenteral treatment for osteoporosis, for fracture prevention in people with neurodegenerative parkinsonism. Aiming to enroll 3,500 participants age 65 years or older, TOPAZ is one of the largest randomized, placebo-controlled clinical trials ever attempted in parkinsonism.

The presence of a caregiver is associated with patient outcomes in patients with Parkinson's disease and atypical parkinsonisms.

Introduction: Approximately 88% of men and 79% of women with Parkinson's disease (PD) identify an informal caregiver. Although caregivers can play a key role in supporting patients, little is known about how and whether PD patients with and without caregivers differ in terms of physical, cognitive, and mood outcomes. This study explored whether caregiver presence was associated with variations in patient presentation and outcomes in a palliative PD and atypical PD population.

Subthalamic nucleus deep brain stimulation with a multiple independent constant current-controlled device in Parkinson's disease (INTREPID): a multicentre, double-blind, randomised, sham-controlled study.

Background: Deep brain stimulation (DBS) of the subthalamic nucleus is an established therapeutic option for managing motor symptoms of Parkinson's disease. We conducted a double-blind, sham-controlled, randomised controlled trial to assess subthalamic nucleus DBS, with a novel multiple independent contact current-controlled (MICC) device, in patients with Parkinson's disease.

Methods: This trial took place at 23 implanting centres in the USA.

Comparison of Integrated Outpatient Palliative Care With Standard Care in Patients With Parkinson Disease and Related Disorders: A Randomized Clinical Trial.

Importance: Parkinson disease and related disorders (PDRD) have consequences for quality of life (QoL) and are the 14th leading cause of death in the United States. Despite growing interest in palliative care (PC) for persons with PDRD, few studies are available supporting its effectiveness.

Objective: To determine if outpatient PC is associated with improvements in patient-centered outcomes compared with standard care among patients with PDRD and their caregivers.

Patient and caregiver characteristics associated with caregiver burden in Parkinson's disease: a palliative care approach.

Background: Parkinson's disease (PD) is a neurodegenerative disorder associated with caregiver burden. Higher rates of burden are associated with adverse outcomes for caregivers and patients. Our aim was to understand patient and caregiver predictors of caregiver burden in PD from a palliative care approach.

Correlates of spiritual wellbeing in persons living with Parkinson disease.

Background: Spirituality influences chronic disease coping skills through both positive and negative means. Although previous research notes similar associations between faith and Parkinson disease (PD) management, little is known about spirituality in the context of PD management in a palliative setting. The purpose of this paper is to gain a better understanding of the association between spirituality and PD management to best maximize the effect of spiritual counseling in treatment of the disease.

Education Research: An experiential outpatient teleneurology curriculum for residents.

Objective: Telemedicine is rapidly becoming a major vehicle of delivering neurologic care to patients who have limited access to subspecialists and exaggerated travel hardship. However, neurology residents receive little to no training in telemedicine in outpatient clinics.

Methods: We piloted, to our knowledge, the first formalized, experiential outpatient teleneurology curriculum.

Does outpatient palliative care improve patient-centered outcomes in Parkinson's disease: Rationale, design, and implementation of a pragmatic comparative effectiveness trial.

Patients with Parkinson's disease and related disorders (PDRD) and their families have considerable unmet needs including non-motor symptom management, caregiver support, spiritual wellbeing, advance care planning, and end-of-life care. There is increasing interest in applying palliative care (PC) models to better meet these needs. While PC has been shown to improve care and quality of life (QOL) for people with cancer and heart failure, few studies have evaluated the role of PC for people with PDRD.

Long-Term Outcomes of Bilateral Pallidal Deep Brain Stimulation for X-Linked Dystonia and Parkinsonism.

Background: X-linked dystonia parkinsonism (XDP) causes adult-onset progressive dystonia and parkinsonism, which may not respond to pharmacotherapy.

Objective: Previous case reports have reported beneficial effects from bilateral pallidal (GPi) deep brain stimulation (DBS). Here, we report the long-term clinical outcomes of 3 patients treated at our center.

Top Ten Tips Palliative Care Clinicians Should Know About Parkinson's Disease and Related Disorders.

Parkinson's disease (PD) affects 1%-2% of individuals older than 60 years and is the 14th leading cause of death in the United States. People with PD, across all stages of the disease, suffer from a significant symptom burden that includes many nonmotor symptoms (such as depression, fatigue, pain, and dementia), and most will ultimately die from complications of this degenerative and incurable illness. Even at diagnosis, a palliative care (PC) approach can help the patient adjust to his or her diagnosis and maintain an optimal quality of life.

Neuropalliative care: Priorities to move the field forward.

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.

Pallidal Deep-Brain Stimulation Disrupts Pallidal Beta Oscillations and Coherence with Primary Motor Cortex in Parkinson's Disease.

In Parkinson's disease (PD), subthalamic nucleus beta band oscillations are decreased by therapeutic deep-brain stimulation (DBS) and this has been proposed as important to the mechanism of therapy. The globus pallidus is a common alternative target for PD with similar motor benefits as subthalamic DBS, but effects of pallidal stimulation in PD are not well studied, and effects of pallidal DBS on cortical function in PD are unknown. Here, in 20 PD and 14 isolated dystonia human patients of both genders undergoing pallidal DBS lead implantation, we recorded local field potentials from the globus pallidus and in a subset of these, recorded simultaneous sensorimotor cortex ECoG potentials.