Does a novel community-based outpatient palliative care intervention for Parkinson's disease and related disorders improve care? Qualitative results from patients and care partners.

Background: Palliative care has the potential to address significant unmet needs in people with Parkinson's disease and related disorders, but models that rely on in-person specialty palliative care teams have limited scalability.

Aim: To describe patient and care partner experiences with a novel, community-based palliative care intervention for Parkinson's disease.

Design: Qualitative study embedded in a randomized clinical trial to document participant experiences with a novel palliative care intervention (community neurologist training and remote team-based specialist palliative care).

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.

Aggression Towards Caregivers in Parkinson's Disease and Related Disorders: A Mixed Methods Study.

Background: Aggression is one manifestation of behavioral disturbances in neurodegenerative disease with emerging literature suggesting a high prevalence in Parkinson's disease and related disorders (PDRD).

Objectives: Our aim was to describe characteristics, associated factors, and consequences of aggression towards caregivers in PDRD.

Methods: This is a convergent mixed methods study, leveraging data from 296 PDRD patient-caregiver dyads in a clinical trial of palliative care and semi-structured interviews with a subgroup of 14 caregivers who reported aggression.

Palliative Care and Movement Disorders.

Purpose Of Review: This article reviews the role of palliative care in the treatment of patients with life-limiting neurodegenerative movement disorders.

Recent Findings: Growing evidence indicates that palliative care significantly improves quality of life and symptom burden for people with Parkinson disease and other serious movement disorders, while reducing caregiver burnout. An emphasis on advance care planning guides goal-directed treatment recommendations.

Behavioural reconsolidation interference not observed in a within-subjects design.

Studies of reconsolidation interference posit that reactivation of a previously consolidated memory via a reminder brings it into an active, labile state, leaving it open for potential manipulation. If interfered with, this may disrupt the original memory trace. While evidence for pharmacological reconsolidation interference is widespread, it remains unclear whether behavioural interference using the presentation of competing information can engender it, especially in declarative memory.

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.

Caring for Homebound Veterans during COVID-19 in the U.S. Department of Veterans Affairs Medical Foster Home Program.

The onset of the COVID-19 pandemic made older, homebound adults with multiple chronic conditions increasingly vulnerable to contracting the virus. The United States (US) Department of Veterans Affairs (VA) Medical Foster Home (MFH) program cares for such medically complex veterans residing in the private homes of non-VA caregivers rather than institutional care settings like nursing homes. In this qualitative descriptive study, we assessed adaptations to delivering safe and effective health care during the early stages of the pandemic for veterans living in rural MFHs.

What's in the Sauce? The Specific Benefits of Palliative Care for Parkinson's Disease.

Context: Increasing evidence demonstrates the benefits of palliative care among individuals with Parkinson's disease and related disorders (PDRD), but the critical components that contribute to therapeutic effects are not well understood.

Objectives: To determine the specific items most responsive to a palliative care intervention in PDRD and identify key correlates of improvement in patient and care partner outcomes.

Methods: The main trial was a pragmatic comparative effectiveness trial of outpatient integrated palliative care compared to standard care among participants with PDRD (NCT02533921), showing significantly higher patient QOL at six months and lower care partner burden at 12 months.

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.

Prefrontal Physiomarkers of Anxiety and Depression in Parkinson's Disease.

Anxiety and depression are prominent non-motor symptoms of Parkinson's disease (PD), but their pathophysiology remains unclear. We sought to understand their neurophysiological correlates from chronic invasive recordings of the prefrontal cortex (PFC). We studied four patients undergoing deep brain stimulation (DBS) for their motor signs, who had comorbid mild to moderate anxiety and/or depressive symptoms.

Experience of Community Neurologists Providing Care for Patients With Neurodegenerative Illness During the COVID-19 Pandemic.

Objective: Health care delivery systems transformed rapidly at the beginning of the coronavirus disease 2019 (COVID-19) pandemic to slow the spread of the virus while identifying novel methods for providing care. In many ways, the pandemic affected both persons with neurologic illness and neurologists. This study describes the perspectives and experiences of community neurologists providing care for patients with neurodegenerative illnesses during the COVID-19 pandemic.

Quantifying Parkinson's disease motor severity under uncertainty using MDS-UPDRS videos.

Parkinson's disease (PD) is a brain disorder that primarily affects motor function, leading to slow movement, tremor, and stiffness, as well as postural instability and difficulty with walking/balance. The severity of PD motor impairments is clinically assessed by part III of the Movement Disorder Society Unified Parkinson's Disease Rating Scale (MDS-UPDRS), a universally-accepted rating scale. However, experts often disagree on the exact scoring of individuals.

Lessons from the COVID-19 pandemic for improving outpatient neuropalliative care: A qualitative study of patient and caregiver perspectives.

Background: COVID-19 has impacted persons with serious illness, including those with chronic, neurodegenerative conditions. While there are several reports on COVID-19's impact on inpatient palliative care, literature is limited about the impact on outpatient care which may be more relevant for these patients.

Aim: To generate a person-centered description of the impact of COVID-19 from the perspectives of patients living with neurodegenerative disease and caregivers to improve outpatient palliative care delivery.

Palliative Care for Parkinson's Spectrum Disorders: an Emerging Approach.

Parkinson's spectrum disorders (PSD) are neurodegenerative parkinsonian conditions that carry a tremendous symptom burden. Palliative care is an interdisciplinary medical specialty that focuses on improving quality of life for patients and caregivers affected by serious life-limiting illnesses, at any stage of disease. Research and clinical programs into this emerging therapeutic approach remain limited.

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.

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.

Optimizing future planning in Parkinson disease: suggestions for a comprehensive roadmap from patients and care partners.

Background: Living with Parkinson disease (PD) is complicated by an unpredictable disease course which can delay planning for future needs. This study explores patient and care partner needs related to future planning using a palliative care framework with physical, psychological, social, cultural, end-of-life, and ethical aspects of care in PD to guide analysis.

Methods: Secondary analysis of patient and care partner interviews from a randomized clinical trial comparing interdisciplinary outpatient palliative care versus standard care for individuals with PD and care partners in an academic setting.

Telehealth increases access to palliative care for people with Parkinson's disease and related disorders.

The purpose of this review is to describe the role that telehealth has in the delivery of palliative care to people with Parkinson's disease and related disorders (PDRDs), particularly as their disease advances, and they become homebound. A review of the Cochrane database, PubMed, and the American Academy of Neurology (AAN) guidelines was conducted to identify peer-reviewed publications on this topic. Telehealth has been found to increase access to neurological specialty care for people with PDRDs who live in more under-resourced areas or are homebound due to their advancing neurodegenerative disease.

Cervical dystonia incidence and diagnostic delay in a multiethnic population.

Background: Current cervical dystonia (CD) incidence estimates are based on small numbers in relatively ethnically homogenous populations. The frequency and consequences of delayed CD diagnosis is poorly characterized.

Objectives: To determine CD incidence and characterize CD diagnostic delay within a large, multiethnic integrated health maintenance organization.

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.