Predictors of anxiety in Parkinson's disease: results from a 3-year longitudinal cohort study.

INTRODUCTION: Anxiety symptoms are the most common neuropsychiatric manifestation of Parkinson's disease (PD), contributing to decreased quality of life. Few longitudinal studies in PD samples have examined correlates of anxiety symptoms over time. Understanding predictor variables may help to identify novel targets for reducing anxiety in PD. The aim of this study was to identify predictors of anxiety symptoms over 3 years in a clinic-based PD cohort. METHODS: Our cohort included patients with PD at an academic medical center in the Southeastern United States (n = 105). Visits included assessment of motor, psychiatric, and cognitive features, including neuropsychological testing. For our multivariate model, we selected 11 predictor variables with the most existing evidence or theoretical support for an association with anxiety symptoms in PD. Multivariate linear mixed model regression was performed to determine which variables were significantly associated with anxiety symptoms over time. RESULTS: Over half of participants (57%) met the screening threshold for an anxiety disorder at some point during the study. Independent predictors of anxiety symptoms over time included symptoms of REM sleep behavior disorder (RBD) and dysautonomia. DISCUSSION: In this PD sample, RBD and dysautonomia symptoms were significantly associated with anxiety symptoms over time. Each of these relationships has been reported in one of two prior longitudinal studies. Unlike prior studies, cognitive impairment was not a significant predictor of anxiety symptoms in our sample. Future research should confirm the direction and mechanisms underlying these relationships, including the potential for anxiety symptom reduction through treatment for RBD and dysautonomia.

Social withdrawal in Parkinson's disease: A scoping review.

BACKGROUND: Parkinson's disease (PD) can interfere with individuals' social functioning and lead to social withdrawal. Social withdrawal may result in negative outcomes for persons with PD and their caregivers, such as decreased quality of life. It is necessary to understand the nature of social withdrawal in PD in order to develop strategies to address this issue and prevent negative outcomes. OBJECTIVE: The purpose of this scoping review was to synthesize existing evidence regarding social withdrawal in PD. METHODS: We searched PubMed, CINAHL, and PsycINFO for studies of social withdrawal in individuals living with PD. Findings were organized according to study characteristics, measurement and description of social withdrawal, prevalence, associated factors, and interventions. RESULTS: Fifty-eight studies were included. We found that persons with PD reduced social activities voluntarily and involuntarily, and social withdrawal was related to various factors including physical, cognitive, and psychiatric symptoms and perceived stigma. Community-based social activity programs appeared to improve social participation. Few studies employed longitudinal methods or tested interventions to reduce social withdrawal. CONCLUSIONS: Social withdrawal is associated with various negative outcomes in PD, though more research is needed to understand the true scope of this problem. Limitations in social withdrawal research include vague conceptualization and methodological limitations (i.e., instrumentation and study design), as well as a paucity of interventional studies. The findings of this review can be used to guide hypothesis generation and future study design, with the ultimate goal of mitigating social withdrawal and improving quality of life for people with PD.

Measuring Functional Status in Huntington's Disease.

BACKGROUND: Neuropsychiatric and cognitive symptoms account for substantial morbidity in Huntington's disease (HD), but their impact on functional status may not be captured using the Total Functional Capacity (TFC) scale. The objective of this study was to assess the impact of motor, cognitive, and neuropsychiatric symptoms on functional status in persons with HD, comparing two instruments. METHODS: Multiple regression analyses assessed the relationship between neuropsychiatric, cognitive, and motor symptoms and functional status as measured using TFC and Adult Functional Adaptive Behavior (AFAB) scales. RESULTS: Greater burden of neuropsychiatric (P = 0.017), cognitive (P = 0.001), and motor (P = 0.001) symptoms was associated with greater impairments to functional status as measured by the AFAB scale. Only motor symptoms were associated with TFC scores (P = 0.002). The 3 symptom domains explained more of the variance in AFAB than TFC scores (P = 0.016). CONCLUSIONS: TFC may have limited applicability, particularly in early-stage HD patients, as a measure of functional status. The AFAB scale can be used in HD studies as a more holistic measure of functional status. © 2020 International Parkinson and Movement Disorder Society.

Lifetime neuropsychiatric symptoms in Huntington's disease: Implications for psychiatric nursing.

Neuropsychiatric manifestations of Huntington's disease (HD) can present years before motor symptoms. Nurses with specialized training provide superior care for HD patients, but HD exposure in nursing education is limited. Here we aimed to describe the historical neuropsychiatric burden in 50 HD patients and discuss implications for psychiatric nurses. Fifty patients with HD were assessed by a board-certified psychiatrist and completed surveys about symptoms, social history, medication use, and quality of life outcomes. Descriptive statistics were used to summarize patient characteristics, and correlation analyses assessed the relationships between neuropsychiatric symptoms and quality of life outcomes. Most patients (72%) reported a history of neuropsychiatric symptoms prior to their HD diagnosis. Prodromal anger/irritability was most common (52%), though few patients received treatment for this. Anxiety was the most common current symptom (78%), yet 40% of patients had never been prescribed an SSRI. Anxiety was associated with poorer patient-reported quality of life outcomes (p < .01). HD patients in this sample experienced frequent, early-onset neuropsychiatric symptoms. In coming years, psychiatric nurses in community settings will be more likely to encounter gene-positive HD patients before they develop motor symptoms. Psychiatric nurses can address identified gaps through enhanced screening and encouraging early intervention in those at risk.

Anxiety Symptoms and Disease Severity in Parkinson Disease.

ABSTRACT: BACKGROUND: Anxiety is prevalent in Parkinson disease (PD), negatively affecting quality of life for patients and their families. Targeted anxiety interventions are needed that account for variables such as disease severity; however, there is insufficient evidence regarding the trajectory of anxiety along the disease course. OBJECTIVE: The aim of this study was to investigate the association between disease severity and anxiety symptoms in a PD sample. METHODS: This descriptive study used secondary data analyses of data from a web-based survey study of individuals with PD in the United States. Participants were 21 years or older, had access to the Internet, and were given a diagnosis of PD (N = 72). We performed multiple regression analyses to assess the relationship between patient-reported disease severity and anxiety symptoms. RESULTS: There was a statistically significant association between disease severity and anxiety symptoms in people with PD, after controlling for all 5 explanatory variables (sex, age, wearing off, disease severity, and disease duration) (P < .001). Age and wearing off PD medication also had statistically significant, although smaller, effects on anxiety symptoms (P < .05). CONCLUSION: Disease severity was related to increased anxiety symptoms among individuals with PD. Anxiety intervention research is needed, and future studies should account for variations in disease severity and medication effects in both intervention and study design.

Shared decision-making in persons living with dementia: A scoping review.

Evidence supports that older adults with cognitive impairment can reliably communicate their values and choices, even as cognition may decline. Shared decision-making, including the patient, family members, and healthcare providers, is critical to patient-centered care. The aim of this scoping review was to synthesize what is known about shared decision-making in persons living with dementia. A scoping review was completed in PubMed, CINAHL, and Web of Science. Keywords included content areas of dementia and shared decision-making. Inclusion criteria were as follows: description of shared or cooperative decision making, cognitively impaired patient population, adult patient, and original research. Review articles were excluded, as well as those for which the formal healthcare provider was the only team member involved in the decision-making (e.g., physician), and/or the patient sample was not cognitively impaired. Systematically extracted data were organized in a table, compared, and synthesized. The search yielded 263 non-duplicate articles that were screened by title and abstract. Ninety-three articles remained, and the full text was reviewed; 32 articles were eligible for this review. Studies were from across Europe (n = 23), North America (n = 7), and Australia (n = 2). The majority of the articles used a qualitative study design, and 10 used a quantitative study design. Categories of similar shared decision-making topics emerged, including health promotion, end-of-life, advanced care planning, and housing decisions. The majority of articles focused on shared decision-making regarding health promotion for the patient (n = 16). Findings illustrate that shared decision-making requires deliberate effort and is preferred among family members, healthcare providers, and patients with dementia. Future research should include more robust efficacy testing of decision-making tools, incorporation of evidence-based shared decisionmaking approaches based on cognitive status/diagnosis, and consideration of geographical/cultural differences in healthcare delivery systems.

Social Withdrawal in Huntington's Disease: A Scoping Review.

BACKGROUND: Huntington's disease (HD) commonly presents with impaired social functioning. Specifically, many patients exhibit social withdrawal, or decreased engagement in social activities. Despite the frequency of social withdrawal in HD, no review has been previously published on this subject. OBJECTIVE: The aim of this study was to conduct a scoping review of social withdrawal in HD. METHODS: Two searches were conducted to identify relevant literature. The articles were screened by title and abstract, followed by full text review for all remaining articles. Consistent with scoping review methodology, data extraction focused on identification of broad themes and knowledge gaps. RESULTS: Eight articles were identified that described social withdrawal in HD. Social withdrawal was exhibited by individuals with varying disease severity, and it occurred both within and outside of the home. Social withdrawal was associated with increased caregiver burden, behavioral issues, and psychiatric, cognitive, and physiological changes. Only one case study described an intervention that increased social participation in a previously withdrawn patient. CONCLUSION: Although social withdrawal is commonly encountered in clinical settings, this review highlights the need for prospective studies to systematically evaluate social withdrawal in HD. These studies should be designed to consider disease stage and associated HD features as well as caregiver burden and potential interventions. Additionally, objective measures of social withdrawal should be used when possible, as existing instruments measure perceptions of participation levels rather than actual withdrawal behavior. Such studies will lay the groundwork to improve social functioning and quality of life for people with HD.

Perceived Effects of Neuropsychiatric Symptoms on Functional Status in Early-stage Huntington Disease.

Neuropsychiatric symptoms in Huntington disease (HD) are commonly encountered, but their effects on functional status are poorly understood. In this qualitative study guided by the Theory of Unpleasant Symptoms, 15 HD patients and caregivers completed semi-structured interviews regarding perceived effects of neuropsychiatric symptoms on functional status. Physical, cognitive, and social functional effects were reported, with negative effects on daily activities and social withdrawal being reported by the greatest number of subjects. Participants also reported improved function with intervention for neuropsychiatric symptoms. This study provides a novel description of the lived experiences of HD patients with neuropsychiatric symptoms.

State-of-the-art pharmacological approaches to reduce chorea in Huntington's disease.

Introduction Chorea is a common motor manifestation of Huntington's disease (HD). Two vesicular monoamine transporter type 2 (VMAT-2) inhibitors have been approved by the FDA for treatment of HD chorea, and a third is currently being assessed in a phase 3 trial. Antipsychotic therapies are used off-label for treatment of chorea and can treat comorbid psychiatric symptoms. There is considerable clinical equipoise regarding the safe and effective treatment of chorea and comorbid symptoms in HD.Areas covered: The authors review existing medications used to treat HD chorea in the United States of America (USA). Implications for common comorbid symptoms (e.g. psychiatric, metabolic) are also discussed. Available therapies vary widely in cost, dosing frequency, and off -target effects, both beneficial or negative.Expert opinion: Treatment considerations for chorea should account for patient comorbidities. The authors recommend prospective, observational clinical effectiveness studies which can evaluate the long-term comparative effectiveness and safety of VMAT-2 inhibitors and antipsychotics in HD. Data regarding safety of dual therapy is another critical need. This is especially timely given the changing landscape of HD therapies which may increase cost burden and possibly extend both asymptomatic and symptomatic years for HD patients.

A Call to Action: The Role of Healthcare Providers in Reducing the Burden Associated with Neurogenic Orthostatic Hypotension.

Neurogenic orthostatic hypotension (nOH) is a sustained fall in blood pressure upon standing that frequently affects patients with neurodegenerative diseases (e.g., Parkinson disease) and manifests with symptoms such as lightheadedness and dizziness upon standing. nOH can severely affect patients by increasing the risk of falls and injuries and by decreasing functionality, independence, and quality of life. However, the condition is often under-recognized because of many factors, including the nonspecific nature of the symptoms, patient comorbidities, and patients' reluctance to discuss their symptoms with their healthcare providers. Increased awareness of the burden of nOH and recognition of potential barriers to efficient diagnosis may lead to improved clinical outcomes and better quality of life for patients. To better understand the manifestations and real-life impact of living with nOH symptoms, perspectives from a patient with nOH and his caregiver (wife) are provided, along with key findings from a published survey of patients and caregivers on the burden of nOH. In addition, insights and advice on a practical approach for diagnosing, educating, and treating patients with nOH are outlined.

This article discusses what neurogenic orthostatic hypotension (nOH) is, its symptoms, and how patients and healthcare providers (HCPs) can work together to manage nOH symptoms. What is nOH? People with neurologic disorders, like Parkinson disease, may also have a separate condition called nOH. nOH occurs when blood pressure drops too much when standing up after sitting or lying down. What are the symptoms of nOH, and how can they affect people's lives? Most often, people with nOH report feeling lightheaded, faint, or dizzy when standing up. Other symptoms of nOH include pain in the shoulders and neck, trouble thinking clearly, tiredness, or blurry vision. The symptoms of nOH can cause falls and injuries. Because of nOH symptoms, people may be unable to do daily activities and may feel worried or anxious. What do patients and HCPs need to know when discussing nOH symptoms? A survey showed that patients may not talk about their nOH symptoms with their HCPs unless symptoms are severe, and that patients can find receiving a diagnosis of nOH challenging. Patients can track nOH symptoms in a daily journal to use in discussions with their HCPs. How can HCPs help patients with nOH? HCPs can ask patients with underlying neurologic disorders about symptoms that occur on standing and confirm a diagnosis of nOH by comparing the patient's blood pressures measured lying down and after standing up. HCPs can provide information about lifestyle changes and medications that are available to manage nOH symptoms.

The Impact of Anosognosia on Clinical and Patient-Reported Assessments of Psychiatric Symptoms in Huntington's Disease.

BACKGROUND: Psychiatric symptoms are widely prevalent in Huntington's disease (HD) and exert greater impact on quality of life than motor manifestations. Despite this, psychiatric symptoms are frequently underrecognized and undertreated. Lack of awareness, or anosognosia, has been observed at all stages of HD and may contribute to diminished patient self-reporting of psychiatric symptoms. OBJECTIVE: We sought to evaluate the impact of anosognosia on performance of commonly used clinical rating scales for psychiatric manifestations of HD. METHODS: We recruited 50 HD patients to undergo a formal psychiatrist evaluation, the Problem Behavior Assessment-Short Form (PBA-s), and validated self-report rating scales for depression, anxiety, and anger. Motor impairment, cognitive function, and total functional capacity were assessed as part of clinical exam. Patient awareness of motor, cognitive, emotional, and functional capacities was quantified using the Anosognosia Rating Scale. Convergent validity, discriminant validity, classification accuracy, and anosognosia effect was determined for each psychiatric symptom rating scale. RESULTS: Anosognosia was identified in one-third of patients, and these patients underrated the severity of depression and anxiety when completing self-report instruments. Anosognosia did not clearly influence self-reported anger, but this result may have been confounded by the sub-optimal discriminant validity of anger rating scales. CONCLUSION: Anosognosia undermines reliability of self-reported depression and anxiety in HD. Self-report rating scales for depression and anxiety may have a role in screening, but results must be corroborated by provider and caregiver input when anosognosia is present. HD clinical trials utilizing patient-reported outcomes as study endpoints should routinely evaluate participants for anosognosia.