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1.
Artigo em Inglês | MEDLINE | ID: mdl-32111637

RESUMO

OBJECTIVES: We aimed to identify existing outcome measures for functional neurological disorder (FND), to inform the development of recommendations and to guide future research on FND outcomes. METHODS: A systematic review was conducted to identify existing FND-specific outcome measures and the most common measurement domains and measures in previous treatment studies. Searches of Embase, MEDLINE and PsycINFO were conducted between January 1965 and June 2019. The findings were discussed during two international meetings of the FND-Core Outcome Measures group. RESULTS: Five FND-specific measures were identified-three clinician-rated and two patient-rated-but their measurement properties have not been rigorously evaluated. No single measure was identified for use across the range of FND symptoms in adults. Across randomised controlled trials (k=40) and observational treatment studies (k=40), outcome measures most often assessed core FND symptom change. Other domains measured commonly were additional physical and psychological symptoms, life impact (ie, quality of life, disability and general functioning) and health economics/cost-utility (eg, healthcare resource use and quality-adjusted life years). CONCLUSIONS: There are few well-validated FND-specific outcome measures. Thus, at present, we recommend that existing outcome measures, known to be reliable, valid and responsive in FND or closely related populations, are used to capture key outcome domains. Increased consistency in outcome measurement will facilitate comparison of treatment effects across FND symptom types and treatment modalities. Future work needs to more rigorously validate outcome measures used in this population.

2.
Neurorehabil Neural Repair ; : 1545968320912756, 2020 Mar 23.
Artigo em Inglês | MEDLINE | ID: mdl-32202203

RESUMO

Background. People with Parkinson's disease and freezing of gait (FOG+) have more falls, postural instability and cognitive impairment compared with FOG-. Objective. To conduct a secondary analysis of the V-TIME study, a randomized, controlled investigation showing a greater reduction of falls after virtual reality treadmill training (TT + VR) compared with usual treadmill walking (TT) in a mixed population of fallers. We addressed whether these treadmill interventions led to similar gains in FOG+ as in FOG-. Methods. A total of 77 FOG+ and 44 FOG- were assigned randomly to TT + VR or TT. Participants were assessed pre- and posttraining and at 6 months' follow-up. Main outcome was postural stability assessed by the Mini Balance Evaluation System Test (Mini-BEST) test. Falls were documented using diaries. Other outcomes included the New Freezing of Gait Questionnaire (NFOG-Q) and the Trail Making Test (TMT-B). Results. Mini-BEST scores and the TMT-B improved in both groups after training (P = .001), irrespective of study arm and FOG subgroup. However, gains were not retained at 6 months. Both FOG+ and FOG- had a greater reduction of falls after TT + VR compared with TT (P = .008). NFOG-Q scores did not change after both training modes in the FOG+ group. Conclusions. Treadmill walking (with or without VR) improved postural instability in both FOG+ and FOG-, while controlling for disease severity differences. As found previously, TT + VR reduced falls more than TT alone, even among those with FOG. Interestingly, FOG itself was not helped by training, suggesting that although postural instability, falls and FOG are related, they may be controlled by different mechanisms.

3.
Neurology ; 2020 Mar 11.
Artigo em Inglês | MEDLINE | ID: mdl-32161030

RESUMO

OBJECTIVE: To determine the prevalence and clinical effect of ophthalmologic symptoms in patients with Parkinson disease (PD), compared with controls, using a standardized questionnaire. METHODS: In this observational, cross-sectional, multicenter study, 848 patients with PD and 250 healthy controls completed the Visual Impairment in Parkinson's Disease Questionnaire (VIPD-Q). The VIPD-Q addressed 4 domains according to structures: (1) ocular surface; (2) intraocular; (3) oculomotor; and (4) optic nerve. The questionnaire also assessed the effect of ophthalmologic symptoms on daily activities. RESULTS: One or more ophthalmologic symptoms were reported by 82% (95% confidence interval [CI], 80-85) of patients, compared with 48% (95% CI, 42-54) of controls (p < 0.001). Patients with PD experienced more ophthalmologic symptoms across all domains than controls (p < 0.001), as reflected by a higher VIPD-Q total score among patients (median 10 [interquartile range (IQR) 13]) than controls (median 2 [IQR 5]; p < 0.001). Ophthalmologic symptoms interfered with daily activities in 68% (95% CI, 65-71) of patients, compared with 35% (95% CI, 29-41) of controls (p < 0.001). CONCLUSION: Patients with PD have a higher prevalence of ophthalmologic symptoms than controls. Moreover, these frequently interfere with daily activities. A screening questionnaire such as the VIPD-Q may help with identifying ophthalmologic symptoms in PD, thereby enabling more timely treatment.

4.
Exp Brain Res ; 2020 Mar 14.
Artigo em Inglês | MEDLINE | ID: mdl-32172352

RESUMO

The field of neuroscience is increasingly dominated by a preferred use of big data, where analysis of large numbers has become an essential area of development. We here draw attention to the importance of smaller numbers, and more specifically, to the historical and continued importance of detailed and judiciously performed studies in single healthy volunteers or single patients with a unique clinical presentation, as an important approach to study normal functions of the nervous system, and to understand the pathophysiology underlying neurological movement disorders. We illustrate this by discussing several historical examples and by summarising Professor John Rothwell's impressive body of work in single-patient studies, highlighting some of his seminal n = 1 studies that have had a great impact on the field. In doing so, we hope to provide a powerful incentive for the next generation of neuroscientists to keep appreciating the value of detailed analyses of single observations.

5.
Lancet Neurol ; 2020 Feb 11.
Artigo em Inglês | MEDLINE | ID: mdl-32059811

RESUMO

Mobile health technologies (wearable, portable, body-fixed sensors, or domestic-integrated devices) that quantify mobility in unsupervised, daily living environments are emerging as complementary clinical assessments. Data collected in these ecologically valid, patient-relevant settings can overcome limitations of conventional clinical assessments, as they capture fluctuating and rare events. These data could support clinical decision making and could also serve as outcomes in clinical trials. However, studies that directly compared assessments made in unsupervised and supervised (eg, in the laboratory or hospital) settings point to large disparities, even in the same parameters of mobility. These differences appear to be affected by psychological, physiological, cognitive, environmental, and technical factors, and by the types of mobilities and diagnoses assessed. To facilitate the successful adaptation of the unsupervised assessment of mobility into clinical practice and clinical trials, clinicians and researchers should consider these disparities and the multiple factors that contribute to them.

7.
Mov Disord ; 2020 Feb 20.
Artigo em Inglês | MEDLINE | ID: mdl-32080891

RESUMO

BACKGROUND: Sleep disturbances and nocturnal hypokinesia are common in Parkinson's disease (PD). Recent work using wearable technologies showed fewer nocturnal movements in PD when compared with controls. However, it is unclear how these manifest across the disease spectrum. OBJECTIVES: We assessed the prevalence of sleep disturbances and nocturnal hypokinesia in early and advanced PD and their relation to nonmotor symptoms and dopaminergic medication. METHODS: A total of 305 patients with PD with diverse disease severity (Hoehn and Yahr [H&Y] stage 1 = 47, H&Y stage 2 = 181, H&Y stage 3 = 77) and 205 healthy controls continuously wore a tri-axial accelerometer on the lower back for at least 2 days. Lying, turning, and upright -time at night were extracted from the acceleration signals. Percent upright time and nighttime walking were classified as sleep interruptions. The number, velocity, time, side, and degree of rotations in bed were used to evaluate nocturnal movements. RESULTS: Nocturnal lying time was similar among all groups (healthy controls, 7.5 ± 1.2 hours; H&Y stage 1, 7.3 ± 0.9 hours; H&Y stage 2, 7.2 ± 1.3 hours; H&Y stage 3, 7.4 ± 1.6 hours; P = 0.501). However, patients with advanced PD had more upright periods, whereas the number and velocity of their turns were reduced (P ≤ 0.021). Recently diagnosed patients (<1 year from diagnosis) were similar to controls in the number of nocturnal turns (P = 0.148), but showed longer turning time (P = 0.001) and reduced turn magnitude (P = 0.002). Reduced nocturnal movements were associated with increased PD motor severity and worse dysautonomia and cognition and with dopaminergic medication. CONCLUSIONS: Using wearable sensors for continuous monitoring of movement at night may offer an unbiased measure of disease severity that could enhance optimal nighttime dopaminergic treatment and utilization of turning strategies. © 2020 International Parkinson and Movement Disorder Society.

9.
BMC Neurol ; 20(1): 26, 2020 Jan 17.
Artigo em Inglês | MEDLINE | ID: mdl-31952511

RESUMO

BACKGROUND: Parkinson's disease (PD) and atypical parkinsonisms (APD) have overlapping symptoms challenging an early diagnosis. Diagnostic accuracy is important because PD and APD have different prognosis and response to treatment. We aimed to identify diagnostic inflammatory biomarkers of PD and APD in cerebrospinal fluid (CSF) using the multiplex proximity extension assay (PEA) technology and to study possible correlations of biomarkers with disease progression. METHODS: CSF from a longitudinal cohort study consisting of PD and APD patients (PD, n = 44; multiple system atrophy (MSA), n = 14; vascular parkinsonism (VaP), n = 9; and PD with VaP, n = 7) and controls (n = 25) were analyzed. RESULTS: Concentrations of CCL28 were elevated in PD compared to controls (p = 0.0001). Five other biomarkers differentiated both MSA and PD from controls (p < 0.05) and 10 biomarkers differentiated MSA from controls, of which two proteins, i.e. beta nerve growth factor (ß-NGF) and Delta and Notch like epidermal growth factor-related receptor (DNER), were also present at lower levels in MSA compared to PD (both p = 0.032). Two biomarkers (MCP-1 and MMP-10) positively correlated with PD progression (rho > 0.650; p < 0.01). CONCLUSIONS: PEA technique identified potential new CSF biomarkers to help to predict the prognosis of PD. Also, we identified new candidate biomarkers to distinguish MSA from PD.

10.
Trials ; 21(1): 88, 2020 Jan 15.
Artigo em Inglês | MEDLINE | ID: mdl-31941538

RESUMO

BACKGROUND: Current guidelines recommend that every person with Parkinson's disease (PD) should have access to Parkinson's disease nurse specialist (PDNS) care. However, there is little scientific evidence of the cost-effectiveness of PDNS care. This hampers wider implementation, creates unequal access to care, and possibly leads to avoidable disability and costs. Therefore, we aim to study the (cost-)effectiveness of specialized nursing care provided by a PDNS compared with usual care (without PDNS) for people with PD in all disease stages. To gain more insight into the deployed interventions and their effects, a preplanned subgroup analysis will be performed on the basis of disease duration (diagnosis < 5, 5-10, or > 10 years ago). METHODS: We will perform an 18-month, single-blind, randomized controlled clinical trial in eight community hospitals in the Netherlands. A total of 240 people with PD who have not been treated by a PDNS over the past 2 years will be included, independent of disease severity or duration. In each hospital, 30 patients will randomly be allocated in a 1:1 ratio to receive either care by a PDNS (who works according to a recent guideline on PDNS care) or usual care. We will use two co-primary outcomes: quality of life (measured with the Parkinson's Disease Questionnaire-39) and motor symptoms (measured with the Movement Disorders Society-sponsored revision of the Unified Parkinson's Disease Rating Scale part III). Secondary outcomes include nonmotor symptoms, health-related quality of life, experienced quality of care, self-management, medication adherence, caregiver burden, and coping skills. Data will be collected after 12 months and 18 months by a blinded researcher. A healthcare utilization and productivity loss questionnaire will be completed every 3 months. DISCUSSION: The results of this trial will have an immediate impact on the current care of people with PD. We hypothesize that by offering more patients access to PDNS care, quality of life will increase. We also expect healthcare costs to remain equal because increases in direct medical costs (funding additional nurses) will be offset by a reduced number of consultations with the general practitioner and neurologist. If these outcomes are reached, wide implementation of PDNS care will be warranted. TRIAL REGISTRATION: ClinicalTrials.gov, NCT03830190. Registered February 5, 2019 (retrospectively registered).

11.
J Parkinsons Dis ; 10(1): 1-3, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-31929123
12.
Artigo em Inglês | MEDLINE | ID: mdl-31942969

RESUMO

BACKGROUND: Physical activity is linked to many positive health outcomes, stimulating the development of exercise programs. However, many falls occur whilst walking and so promoting activity might paradoxically increase fall rates, causing injuries and worse quality of life. The relationship between activity exposure and fall rates remains unclear. We investigated the relationship between walking activity (exposure to risk) and fall rates before and after an exercise program (V-TIME). METHODS: 109 elderly fallers, 38 people with mild cognitive impairment (MCI) and 128 people with Parkinson's disease (PD) were randomly assigned to one of two active interventions: treadmill training only or treadmill training combined with a virtual reality component. Participants were tested before and after the interventions. Free-living walking activity was characterised by volume, pattern, and variability of ambulatory bouts using an accelerometer positioned on the lower back for one week. To evaluate that relationship between fall risk and activity, a normalized index was determined expressing fall rates relative to activity exposure (FRA index), with higher scores indicating a higher risk of falls per steps taken. RESULTS: At baseline the FRA index was higher for people with PD compared to those with MCI and elderly fallers. Walking activity did not change after the intervention for the groups but the FRA index decreased significantly for all groups (p≤0.035). CONCLUSIONS: This work showed that V-TIME interventions reduced falls risk without concurrent change in walking activity. We recommend using the FRA index in future fall prevention studies to better understand the nature of intervention programs.

13.
J Parkinsons Dis ; 10(1): 223-231, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-31561387

RESUMO

Clinical decision making for Parkinson's disease patients is supported by a combination of three distinct information resources: best available scientific evidence, professional expertise, and the personal needs and preferences of patients. All three sources have clear value but also share several important limitations, mainly regarding subjectivity, generalizability and variability. For example, current scientific evidence, especially from controlled clinical trials, is often based on selected study populations, making it difficult to translate the outcome to the care for individual patients in everyday clinical practice. Big data, including data from real-life unselected Parkinson populations, can help to bridge this information gap. Fine-grained patient profiles created from big data have the potential to aid in identifying therapeutic approaches that will be most effective given each patient's individual characteristics, which is particularly important for a disorder characterized by such tremendous interindividual variability as Parkinson's disease. In this viewpoint, we argue that big data approaches should be acknowledged and harnessed, not to replace existing information resources, but rather as a fourth and complimentary source of information in clinical decision making, helping to represent the full complexity of individual patients. We introduce the 'quadruple decision making' model and illustrate its mode of action by showing how this can be used to pursue precision medicine for persons living with Parkinson's disease.

14.
J Parkinsons Dis ; 10(1): 207-212, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-31594246

RESUMO

BACKGROUND: Early 2014, Kaiser Permanente decided to adopt an innovative model for network-based allied healthcare for persons with Parkinson's disease (PD), based on the principles of the Dutch ParkinsonNet. OBJECTIVE: We present the interventions that were performed to implement this method at Kaiser Permanente and we show the first outcomes based on these interventions. METHODS: In this study, 57 physical therapists, 18 speech therapists and 20 occupational therapists, as well as 13 medical centers across the state of California were included. Nine interventions were performed more or less simultaneously, including training and education of healthcare providers and patients, a train the trainer curriculum, organizing IT, streamlining referral processes and building networks. RESULTS: At the start, less than 30% of the patients within the Southern California Region received specialized allied health treatment (consisting of, i.e., gait training, voice training or guidance in activities of daily life). After one year, almost 55% of patients received specialized allied health treatment. In the second year, this number increased to just under 67%, suggesting a sustained concentration of care (the second core component of networked care). This can be seen as a first indicator for successful implementation of the ParkinsonNet network at Kaiser Permanente. CONCLUSIONS: The importance of these findings lies in the fact that a healthcare innovation that proved effective in one country can be transferred successfully to another country and to another healthcare system.

15.
Mov Disord ; 35(1): 109-115, 2020 Jan.
Artigo em Inglês | MEDLINE | ID: mdl-31449705

RESUMO

INTRODUCTION: Falling is among the most serious clinical problems in Parkinson's disease (PD). We used body-worn sensors (falls detector worn as a necklace) to quantify the hazard ratio of falls in PD patients in real life. METHODS: We matched all 2063 elderly individuals with self-reported PD to 2063 elderly individuals without PD based on age, gender, comorbidity, and living conditions. We analyzed fall events collected at home via a wearable sensor. Fall events were collected either automatically using the wearable falls detector or were registered by a button push on the same device. We extracted fall events from a 2.5-year window, with an average follow-up of 1.1 years. All falls included were confirmed immediately by a subsequent telephone call. The outcomes evaluated were (1) incidence rate of any fall, (2) incidence rate of a new fall after enrollment (ie, hazard ratio), and (3) 1-year cumulative incidence of falling. RESULTS: The incidence rate of any fall was higher among self-reported PD patients than controls (2.1 vs. 0.7 falls/person, respectively; P < .0001). The incidence rate of a new fall after enrollment (ie, hazard ratio) was 1.8 times higher for self-reported PD patients than controls (95% confidence interval, 1.6-2.0). CONCLUSION: Having PD nearly doubles the incidence of falling in real life. These findings highlight PD as a prime "falling disease." The results also point to the feasibility of using body-worn sensors to monitor falls in daily life. © 2019 The Authors. Movement Disorders published by Wiley Periodicals, Inc. on behalf of International Parkinson and Movement Disorder Society.

16.
Clin Geriatr Med ; 36(1): 159-172, 2020 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-31733697

RESUMO

This review elaborates on multidisciplinary care for persons living with Parkinson disease by using gait and balance impairments as an example of a treatable target that typically necessitates an integrated approach by a range of different and complementary professional disciplines. Using the International Classification of Functioning, Disability, and Health model as a framework, the authors discuss the assessment and multidisciplinary management of reduced functional mobility due to gait and balance impairments. By doing so, they highlight the complex interplay between motor and nonmotor symptoms, and their influence on rehabilitation. They outline how multidisciplinary care for Parkinson disease can be organized.

17.
J Parkinsons Dis ; 10(1): 333-346, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-31884492

RESUMO

BACKGROUND: Balance impairment in Parkinson's disease (PD) improves only partially with dopaminergic medication. Therefore, non-pharmacological interventions such as physiotherapy are important elements in clinical management. External cues are often applied to improve gait, but their effects on balance control are unclear. OBJECTIVE/METHODS: We performed a prospective, single-blind, randomized clinical trial to study the effectiveness of balance training with and without rhythmical auditory cues. We screened 201 volunteers by telephone; 154 were assigned randomly into three groups: (1) multimodal balance training supported by rhythmical auditory stimuli (n = 56) (RAS-supported multimodal balance training); (2) regular multimodal balance training without rhythmical auditory stimuli (n = 50); and (3) control intervention involving a general education program (n = 48). Training was performed for 5 weeks, two times/week. Linear mixed models were used for all outcomes. Primary outcome was the Mini-BESTest (MBEST) score immediately after the training period. Assessments were performed by a single, blinded assessor at baseline, immediately post intervention, and after one and 6-months follow-up. RESULTS: Immediately post intervention, RAS-supported multimodal balance training was more effective than regular multimodal balance training on MBEST (difference 3.5 (95% Confidence Interval (CI) 2.2; 4.8)), p < 0.001). Patients allocated to both active interventions improved compared to controls (MBEST estimated mean difference versus controls 6.6 (CI 5.2; 8.0), p < 0.001 for RAS-supported multimodal balance training; and 3.0 (CI 2.7; 5.3), p < 0.001 for regular multimodal balance training). Improvements were retained at one-month follow-up for both active interventions, but only the RAS-supported multimodal balance training group maintained its improvement at 6 months. CONCLUSION: Both RAS-supported multimodal balance training and regular multimodal balance training improve balance, but RAS-supported multimodal balance training-adding rhythmical auditory cues to regular multimodal balance training-has greater and more sustained effects.

19.
J Rehabil Med ; 52(1): jrm00010, 2019 12 10.
Artigo em Inglês | MEDLINE | ID: mdl-31820814

RESUMO

OBJECTIVE: To explore the use of applied cognitive strategy behaviours during performance of daily activities in people with Parkinson's disease. DESIGN: Quantitative cross-sectional design. METHODS: A total of 190 persons living at home with non-dementing Parkinson's disease were videotaped while performing a self-chosen activity in their natural environment. The videotaped performance was scored using the "Perceive, Recall, Plan and Perform System of Task Analysis" to measure: (i) performance mastery; and (ii) effective use of 34 cognitive strategy behaviours covering: attention and sensory processing (Perceive), accessing task-related knowledge (Recall), response planning and evaluation (Plan) and performance control (Perform). Mean performance mastery and a hierarchy of least to most effective applied cognitive strategy behaviours were determined for the total group and for 2 sub-groups based on disease severity. A multi-faceted Rasch model was used for data analysis. RESULTS: Mean performance mastery was 56% (standard deviation (SD) 28). Least efficient cognitive strategy behaviours were those used for planning, evaluating and controlling performance and most efficient strategies were those used for sensory discrimination and recalling factual information. More advanced disease indicated less efficient use of applied cognition. CONCLUSION: The results suggest that the efficiency of applied cognitive strategy behaviours is compromised in a certain pattern in people with Parkinson's disease, and that it declines with disease progression.

20.
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