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1.
IntroductionApproximately 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.MethodsSecondary data on individuals with PD and their caregivers came from baseline data of a 3-site randomized controlled trial of outpatient palliative care for PD in the US and Canada. Measures included: MDS UPDRS III, Montreal Cognitive Assessment, quality of life (QOL) measures, depression, prolonged grief, spirituality (FACIT SP-12) and Palliative Performance Scale.ResultsOf 210 participants, 175 (83%) had a caregiver. Patients with caregivers had greater motor difficulty, lower cognitive scores, and greater palliative needs as measured by the Palliative Performance Scale. Despite poorer cognitive and motor function, those with caregivers had higher QOL as measured by the Quality of Life in Alzheimer Disease and less spiritual distress. There were no group differences on anxiety, depression, or grief. Caregiver presence moderated the association between lower MoCA score and worse motor symptoms.ConclusionFindings of the present study highlight the influence of caregiver engagement on PD patient outcomes. These findings have implications for clinical practice and suggest that presence of a caregiver may be an important modifying variable on patient outcomes to examine in future research.  相似文献   

2.
ObjectiveDementia symptoms (cognitive function, daily-living function, and neuropsychiatric symptoms) become more serious over time, which is likely to increase caregiver burden. The aim of this study is to investigate which dementia-related symptoms, and how the progression of these symptoms, have influenced caregiver burden during a 1-year follow-up assessment.MethodsA total of 110 patients with dementia were assessed for their cognitive function, daily-living function, and neuropsychiatric symptoms. Caregivers were assessed for their caregiver burden. Bivariate analyses were conducted between caregiver burden and dementia patients'' symptoms, in order to examine which particular symptoms were significantly associated with caregiver burden at the baseline. A multiple regression analysis was then conducted with each significantly associated variable with a view to identifying determinants, influencing caregiver burden. Additionally, bivariate analyses were conducted between the changes in caregiver burden and the changes in patients'' symptoms, to investigate which patient variable could best describe caregiver burden from baseline to the 1-year follow-up. A multiple regression analysis was conducted with each significantly-associated change in symptom, in order to identify determinants that influence a change in caregiver burden.ResultsNeuropsychiatric symptoms, such as irritability, aberrant motor-behavior, delusions and disinhibition were found to be significant predictors of caregiver burden at baseline, according to multiple regression analysis. In addition, changes in neuropsychiatric symptoms, such as delusions, agitation and memory-related functioning in daily-living significantly predict a change in caregiver burden.ConclusionOur results demonstrate that neuropsychiatric symptoms and memory impairment in daily-living functions are significant predictors of an increase in caregiver burden.  相似文献   

3.
《Alzheimer's & dementia》2008,4(3):203-211
BackgroundThis study was designed to evaluate the feasibility, reliability, and validity of use of caregivers' ratings of two health preference measures as outcomes for cost-effectiveness analyses in persons with very mild to moderate Alzheimer's disease (AD).MethodsCaregivers completed ratings of preference for AD patients' health by use of the EuroQol-5D system (EQ-5D) and the Health Utilities Index Mark 2 (HUI2). They also rated patients' cognition, mood, burden, AD-specific and generic health-related quality of life (QOL), and activities of daily living.ResultsCaregivers' HUI2 scores were reliable. Neither the caregiver ratings of the patients' health by use of the EQ-5D nor the HUI2 had a relationship with severity of cognitive impairment. Both the EQ-5D and the HUI2 had expected relationships with caregivers' assessments of patients' function, AD-specific QOL, and physical and mental health and selected subscales of the measures of AD-specific QOL and overall health. In addition, caregiver scores showed relationships with patient self-rated function, mood, and physical health but not AD-specific QOL. Caregiver burden was associated with caregivers' scores.ConclusionsCaregiver-completed ratings of preference for patients' health made by use of the EQ-5D and the HUI2 have many of the characteristics of valid preference measures. However, the lack of association with patient Mini-Mental Status Exam scores and patient self-rated AD-specific QOL and the associations with caregiver subjective burden might present limitations to their use as proxy measures for cost-effectiveness analyses.  相似文献   

4.
《Seizure》2014,23(1):47-54
PurposeLittle is known about the effect of psychogenic non epileptic seizures (PNES) to caregiver quality of life (QOL), particularly as it compares to epileptic seizures (ES). We sought to characterize this effect and identify its determinants.MethodsThe study population comprised of 126 ES and 33 PNES patients who underwent video EEG monitoring along with 48 and 18 caregivers respectively who accompanied them to their investigations. Patients completed questionnaires providing demographic, disease-related, cognitive, psychiatric, sleep and QOL information on admission, prior to their diagnosis being clarified. Their caregivers completed questionnaires providing demographic, disease burden and generic QOL information. Paraclinical data were also gathered. Regression analysis was used to identify patient and caregiver related determinants of patient and caregiver QOL.ResultsQOL scores were significantly worse for PNES than ES patients and were mainly linked to depression levels. PNES and ES caregivers had comparable demographic characteristics and QOL scores. ES caregiver QOL was better in employed caregivers with lower burden scores for the physical component summary (PCS) and worse in female caregivers of depressed patients with higher burden scores for the mental component summary (MCS). Caregiver burden score was the strongest correlate of PNES caregiver MCS QOL score.ConclusionCaregiver QOL in PNES does not differ from caregiver QOL in ES, while patient QOL is worse in PNES. Caregiver burden emerges as a consistent correlate of caregiver QOL both in ES and PNES. These findings advocate for consideration of caregiver burden and QOL in PNES in clinical practice and for future research paradigms.  相似文献   

5.
BackgroundThere is a substantial interest in the impact of exercise on reduction of disability and rate of progression of Parkinson's disease (PD).ObjectiveThe primary aim was to describe exercise habits of PD patients and factors associated with greater levels of exercise. The secondary aim was to explore whether regular exercise is associated with a slower decline of function, disease-related quality of life, and caregiver burden.MethodsThe National Parkinson's Foundation (NPF) QII Registry data was used to analyze variables that correlate with levels of exercise in PD patients across disease severity. Subjects were categorized into three groups: non-exercisers (0 min/week), low exercisers (1–150 min/week), and regular exercisers (>150 min/week). Health related outcomes, disease metrics, and demographic factors associated with exercise were examined using bivariate analyses. Multiple regression models controlled for disease duration, severity, and cognitive function. An exploratory analysis was completed on the association of baseline level of exercise with health outcomes at one year follow up.Results4866 subjects were included in the baseline analysis and 2252 subjects who had second visits were included in the longitudinal data. Regular exercisers at baseline were associated with better QOL, mobility, and physical function, less progression of disease, less caregiver burden and less cognitive decline one year later, after controlling for demographic and disease severity variables.ConclusionsThis study provides important preliminary evidence of the beneficial effects of regular exercise in a large PD cohort. Longitudinal studies will be essential to confirm findings.  相似文献   

6.
PurposeTo analyze the main determinants of burden and health-related quality-of-life (HRQoL) in caregivers of Brazilian Parkinson's disease (PD) patients.MethodsCaregivers answered Hospital Anxiety and Depression Scale (HADS), Zarit caregiver burden interview (ZCBI) and EQ-5D, a generic measure of HRQoL. Patients were assessed with Hoehn and Yahr (H&Y) staging; Scales for Outcomes in Parkinson's disease (SCOPA) Motor, Cognition, Psychosocial and Sleep scales; Non-Motor Symptoms Scale; HADS; Clinical Impression of Severity Index; EQ-5D and Parkinson's Psychosis Rating Scale.Results50 Caregiver-patient dyads were assessed. Caregivers were significantly younger (55.7 vs. 65.4 years), p < 0.0001. Eighty-eight per cent of caregivers were females, and 78% were spouses. The proportion of caregivers who scored ≥11 points in the HADS-anxiety or HADS-depression subscales was 12% and 14% respectively. ZCBI mean score was 20.2 (SD 12.8), and significantly worsened as severity of disease, based on H&Y, increased (H&Y 1–2: 16.4, H&Y 3–5: 24.6; p = 0.02). Caregiver's EQ-5D Index and visual analog scale mean scores were 0.7 (SD: 0.26) and 76.3 (SD: 16.2) respectively. Weak to moderate association (r = ?0.27 to ?0.39) between EQ-5D Index and ZBCI mean scores was observed in caregivers. Patient outcomes (sleep disorders and behavioral-psychotic symptoms) and caregiver outcomes (mood, time of caregiving) were independent predictors of caregiver burden (adjusted R2 = 0.55; p < 0.0001) in the multivariate regression analysis. Caregiver's mood status was a significant determinant of caregiver's HRQoL, as measured by the EQ-5D Index (adjusted R2 = 0.28; p = 0.006).ConclusionsPatients' psychiatric and sleep disorders and caregiver's mood significantly influenced burden and HRQoL in Brazilian PD caregivers.  相似文献   

7.
BackgroundCaregivers of patients with Parkinson's Disease (PD) often provide important support in the pre- and postoperative phase of Deep Brain Stimulation (DBS). DBS-associated changes of patient-functioning may affect caregiver wellbeing and impact the support system. Factors influencing caregiver-wellbeing under these circumstances are incompletely known.Objectiveto systematically review studies of sufficient methodological quality on the impact of DBS on caregivers of PD patients.Methodsusing PRISMA guidelines, major databases were searched up to May 2020. Five subcategories were identified: Caregiver burden, Caregiver cognitive and psychiatric functioning, Caregiver Quality of Life (QoL), Marital Satisfaction/Conflicts, and Caregiver Satisfaction. Quality was assessed using an in-house checklist.Results293 studies were identified; 12 were ultimately included. Caregiver burden, psychiatric and cognitive functioning and QoL remained relatively unchanged. Results on marital satisfaction/conflicts were contrasting: an increase in marital conflicts despite improved relationship quality scores DBS. Caregiver satisfaction with surgery was low with 50–58% of caregivers being disappointed with DBS outcomes. Concerning caregiver related factors: a higher preoperative caregiver QoL, younger age, lower scores on psychiatric rating scales, and more favourable preoperative relationship quality scores, were associated with better caregiver wellbeing. A favourable patient-profile includes younger age and age-at-onset, shorter disease duration, lower medication requirements, and lower scores on psychiatric rating scales.ConclusionAlthough most patient- and caregiver-related subdomains remained unchanged after DBS, dissatisfaction among caregivers and marital problems may constitute a large risk for a well-functioning patient-caregiver dyad. Early recognition of potential problem situations may improve post-DBS care for both patients and caregivers.  相似文献   

8.
IntroductionThe neural underpinnings of health-related quality of life in Parkinson's disease remain unclear. This study was conducted to unravel which motor and non-motor symptoms in Parkinson's disease influence health-related quality of life and reveal neural networks most likely linked to it.MethodsComprehensive clinical assessments were conducted for 247 Parkinson's disease patients and image analyses were performed for 181 patients. Clinical scores commonly used to assess various symptoms related to health-related quality of life were investigated. Factor and resting-state functional magnetic resonance imaging analyses were reviewed to reveal health-related quality of life-associated brain networks.ResultsThe Spearman's rank correlation coefficient for the Parkinson's disease Questionnaire-39 summary index was high in the Activities-specific Balance Confidence Scale, Movement Disorder Society-Sponsored Revision of the Unified Parkinson's Disease Rating Scale part 2, Freezing of Gait Questionnaire, and Self-reported Autonomic Symptoms in Parkinson's disease. Multiple regression and Random Forest regression analyses indicated that health-related quality of life-associated factors were Movement Disorder Society-Sponsored Revision of the Unified Parkinson's Disease Rating Scale part 1, Depression Rating Scales, and the above-mentioned scales. The resting-state functional magnetic resonance imaging analysis revealed decreased functional connectivity between the anterior cingulate cortex and right temporo-parietal junction as health-related quality of life worsened.ConclusionFear of falling, daily living activities, gait freezing, and autonomic dysfunction have notable effects on health-related quality of life in Parkinson's disease. Brain networks consisting of the anterior cingulate cortex and temporo-parietal junction may be associated with the emotion-related and social factors of health-related quality of life in Parkinson's disease.  相似文献   

9.
IntroductionAlexithymia is a neuropsychiatric symptom conceptualized as difficulty identifying and describing feelings. Although associated with other non-motor symptoms, mainly neuropsychiatric, alexithymia may present as an isolated symptom in persons with Parkinson's Disease (PwP). The objective of the study is to identify determinants of alexithymia and its association with quality of life (QoL) in Parkinson's disease.MethodsSubjects with Parkinson's disease were recruited. The following instruments were applied: Movement Disorders Society Unified Parkinson's Disease Rating Scale (MDS-UPDRS), Non-Motor Symptoms Scale (NMSS), Montreal Cognitive Assessment (MoCA), Toronto alexithymia scale (TAS-20) and Parkinson's Disease Questionnaire (PDQ-8). Matched healthy controls were screened using TAS-20. Clinical and demographical variables were compared between alexithymic and non-alexithymic. Regression models were used to find determinants of alexithymia. Impact of alexithymia on QoL was estimated with a linear regression model.Results98 patients were included. 56.1% PwP and 28.8% controls were alexithymic (p < 0.001). Education level (OR 0.86) and NMSS urinary score (OR 1.09) determined alexithymia as well as TAS-20 score. Alexithymia was an independent determinant of QoL.ConclusionsAlexithymia is a prevalent independent non-motor symptom in PwP with impact on QoL. Low education level and urinary symptoms are important determinants of alexithymia.  相似文献   

10.
BackgroundPediatric obsessive-compulsive disorder (OCD) is associated with deleterious familial effects; caregivers are often enmeshed in the disorder and can experience considerable burden and decreased quality of life (QoL). Consequently, this study examined burden and QoL in caregivers of youth with OCD enrolled in an intensive outpatient or partial hospitalization program.MethodThe relationships between caregiver QoL and burden and the following variables were investigated: OCD symptom severity, functioning (youth functional impairment, general family functioning), family (family accommodation, parental relationship satisfaction, positive aspects of caregiving), and comorbid psychopathology (caregiver anxiety and depressive symptoms, youth internalizing and externalizing behaviors). Seventy-two child and caregiver dyads completed clinician- and self-rated questionnaires.ResultsComponents of caregiver QoL correlated with caregiver-rated functional impairment, family accommodation, youth externalizing behaviors, and caregiver psychopathology. Aspects of caregiver burden correlated with child OCD symptom severity, functional impairment related to OCD, as well as caregiver and child comorbid psychopathology. Caregiver depressive symptoms predicted caregiver QoL, and caregiver depressive symptoms and child externalizing symptoms both predicted caregiver burden. Caregiver burden did not mediate the relationship between obsessive-compulsive symptom severity and caregiver QoL.ConclusionUltimately, elucidating factors associated with increased caregiver burden and poorer QoL is pertinent for identifying at-risk families and developing targeted interventions.  相似文献   

11.
Background: Self-efficacy is the belief that one can perform a specific task or behaviour and is a modifiable attribute which has been shown to influence health behaviours. Few studies have examined the relationship between self-efficacy for dementia-related tasks and symptoms of burden and depression in caregivers.

Methods: Eighty four patient/caregiver dyads with Alzheimer's disease were recruited through a memory clinic. Patient function, cognition and neuropsychiatric symptoms were assessed together with caregiver burden, personality, depressive symptoms, coping strategies and self-efficacy for completing tasks related to dementia care.

Results: 33% (28) of caregivers reported significant depressive symptoms (CES-D?≥?10). In multivariate analyses, caregiver burden was predicted by self-efficacy for symptom management, neuroticism, patient function and neuropsychiatric symptoms while caregiver depression was predicted by self-efficacy for symptom management, caregiver educational level, neuroticism, emotion-focused coping, dysfunctional coping and patient function. In patients with moderate to severe impairment (MMSE?≤?20), self-efficacy for symptom management behaved as a mediator between patient neuropsychiatric symptoms and symptoms of burden and depression in caregivers.

Conclusions: Further longitudinal investigation is warranted to determine if self-efficacy might be usefully considered a target in future interventional studies to alleviate symptoms of burden and depression in Alzheimer's caregivers.  相似文献   


12.
The objective of this study is to describe the characteristics of the caregivers of patients with Parkinson's disease (PD) and to analyze the association between these characteristics and caregiver burden, perceived health and mood status, and identify their predictors. A multicenter, nationwide, observational, cross‐sectional study that included 289 patient–caregiver pairs was conducted. Caregiver self‐assessments were the Hospital Anxiety and Depression Scale (HADS), EuroQol (EQ), and Zarit Caregiver Burden Inventory (ZCBI). Most caregivers in the study were women aged 60 years or thereabouts. Over two thirds were gainfully employed or housewives, 75% were patients' spouses, and the majority (96.5%) had been permanently taking care of the patient for 6 ± 5.4 years. Less than 5% of patients were in the most advanced stages of disease, and direct costs were 6,350 euros per patient per year. Caregivers had more mood disorders and worse health‐related quality of life (HRQol; EQ‐Tariff) than did the general population. Caregiver HADS and EuroQol scores displayed a weak correlation (rS = 0.01–0.28) with patient‐related variables (disease duration, HY, SCOPA‐Motor, SCOPA‐AUT, HADS, PPRS, and CISI‐PD) whereas the ZCBI correlated moderately (rS = 0.27–0.47). Among caregivers, the EQ‐Tariff was significantly lower and the HADS‐Anxiety scores significantly higher for women. ZCBI and HADS‐depression, though not EuroQol and HADS‐anxiety, scores significantly increased with increasing PD severity levels. Caregivers' affective status proved the most important factor influencing their burden and perceived health, whereas patient‐related variables influenced caregiver burden and mood but not health status. In PD, prevalence of affective disorders among patients' caregivers is high and influences both burden and HRQoL. © 2008 Movement Disorder Society  相似文献   

13.
14.
The aim of this study was to identify determinants of functional disability, patient’s quality of life (QoL) and caregivers’ burden in Huntington’s disease (HD). Eighty HD patients participated in the study. Motor and behavioral disturbances as well as cognitive impairment were assessed using motor, behavioral and cognitive parts of the Unified Huntington Disease Rating Scale (UHDRS); Hamilton Depression Rating Scale was used to assess depression. Disability, health-related QoL and the impact of the disease on the caregivers were assessed using the following methods: UHDRS Functional Assessment Score, SF-36 Scale and Caregiver Burden Inventory. Multiple regression analysis showed that motor disturbances, cognitive impairment, apathy and disease duration were the independent predictors of disability. Depression and cognitive disturbances were the determinants of patient’s QoL, while motor disturbances and depression were the predictors of the caregiver burden. Patient’s disability and QoL as well as caregivers’ burden should be taken into consideration while planning treatment strategy and the results of the present study show that the predictors of those treatment targets are different.  相似文献   

15.
PurposeTo assess optimism/pessimism and locus of control in a sample of Parkinson's disease patients and to evaluate their impact on disability and health-related quality of life.Methods99 patients with Parkinson's disease completed the Life Orientation Test, Multidimensional Health Locus of Control, Older Americans Resource and Services Activities of Daily Living Subscale, and Short Form-12 Health Status Survey. Disease stage and severity measures were completed by movement disorder specialists. Correlations and multivariate regressions compared optimism/pessimism and locus of control with disability and health-related quality of life.ResultsHigher optimism and less pessimism were associated with better mental health quality of life. Greater internal locus of control was associated with less disability. These results remained significant when controlling for disease severity.ConclusionsLow optimism or high pessimism is associated with reduced quality of life in Parkinson's disease. Patients with less internal locus of control have greater disability. Interventions that promote personal control and positive attitudes may assist in reducing disability and improving quality of life in Parkinson's disease.  相似文献   

16.
Aims: The aims of this study were: (i) to clarify the general quality of life (QOL) of patients with intractable neurological disease; (ii) to clarify the general QOL of the caregivers of these patients; and (iii) to explore the association of QOL in patient–caregiver pairs. Methods: A cross‐sectional survey was conducted between November 2003 and May 2004 among community‐dwelling patients diagnosed with Parkinson's disease (PD), spinocerebellar degeneration (SCD), multiple system atrophy (MSA), and amyotrophic lateral sclerosis (ALS) and their caregivers using a mailed, self‐administered questionnaire. To measure QOL, we used the Medical Outcome Study 36‐Item Short Form (SF‐36) for patients and the short form of the health‐related QOL scale SF‐36 (SF‐8) for caregivers. Results: A total of 418 questionnaires were analyzed. For the patients, all of the general QOL domains of the SF‐36 were significantly lower than the national standard value for all of the diagnoses. Physical function, role physical, and role emotional domains were also low. For caregivers, all of the QOL summary scores of the SF‐8 for all diagnoses were significantly lower than the national standard value. Although there were several significant correlations of QOL between patients and caregivers, overall the correlations were low. Conclusions: Support for patients with neurological diseases and their caregivers is needed in order to maintain physical and mental QOL.  相似文献   

17.
Most studies investigating correlates of Alzheimer's disease (AD) caregiver burden have focused on the role of objective factors as opposed to subjective factors. Although objective variables (e.g., caregiver age, patient dementia severity, functional status) have been shown to be significantly associated with burden, the correlations generally are modest and explain relatively little of the variability in caregiver outcomes. Moreover, many of these objective variables are not modifiable and are of limited use in the development of caregiver interventions. Thus, there continues to be a need to identify powerful and modifiable determinants of caregiver burden. This study examined the role of two subjective factors-self-efficacy and depressive symptoms-as predictors of AD caregiver burden. Based on a sample of 80 AD caregivers, hierarchical regression analyses revealed that self-efficacy and depressive symptoms each had a significant independent effect on the experience of burden even after accounting for objective factors. These findings suggest that caregiver interventions aimed to reduce burden may benefit from the incorporation of specific strategies to increase self-efficacy and decrease depressive symptoms.  相似文献   

18.
IntroductionTo disentangle the association between impulsive and compulsive behaviors (ICBs), health-related quality of life (HRQOL), satisfaction with life (SwL), and caregiver distress in dyads of people with Parkinson's disease (PwP) and caregivers.MethodsData used in this study were obtained from the ongoing Norwegian ParkWest study, a population-based longitudinal cohort study of the incidence, neurobiology and prognosis of PD in Western Norway. One hundred and one dyads of PwP free of dementia and their caregivers were included 5 years after PD diagnosis and inclusion in the ParkWest study. Standardized clinical rating scales were used to evaluate ICBs, HRQOL, SwL and caregiver distress.ResultsOf 101 PwP-caregiver dyads, self-reported ICBs were seen in 33% of PwP and only caregiver-reported ICBs in 12% of PwP. PwP-reported ICBs were associated with poorer HRQOL and SwL, whereas ICBs reported by caregivers only were associated with increased caregiver distress, but not poorer HRQOL or SwL in PwP.ConclusionsICBs have adverse effects on HRQOL, SwL and caregiver distress. These findings underpin the need for proper identification and management of ICBs in PwP.  相似文献   

19.
BackgroundSurvival in patients with Parkinson's disease is reduced as compared to the general population. We aimed to identify motor and non-motor features that predict mortality in Parkinson's disease.MethodsA broad range of motor and non-motor features were assessed in a hospital-based cohort of 414 patients with Parkinson's disease, who underwent five annual follow-up examinations including vital status assessment. Multivariable Cox's proportional hazards regression analysis was used to evaluate the association between baseline characteristics and mortality risk. Stepwise regression with backward elimination was carried out to determine the best model to predict mortality in Parkinson's disease.ResultsAfter a mean follow-up period of 4.3 years, 49 (11.8%) patients had died. In the stepwise regression model, predictors of mortality in Parkinson's disease were higher age, male sex, cognitive impairment, higher postural instability gait disorder score, and the presence of psychotic symptoms.ConclusionsHigher age, male sex, cognitive impairment, higher postural instability gait disorder score, and the presence of psychotic symptoms are independent predictors of decreased survival in Parkinson's disease. Mortality in Parkinson's disease thus seems to be affected mainly by non-dopaminergic and non-motor features.  相似文献   

20.
Little is known about subjective perceptions of quality of life (QOL) in Huntington's disease (HD). The current study determined correlates of patient and caregiver QOL and assessed change over time. Participants were 22 patient‐caregiver dyads, who rated QOL at baseline and 6 months later. Overall, patients' functional and cognitive impairment were significantly correlated with patient and caregiver QOL. Neuropsychiatric symptoms had differential impact on patient and caregiver QOL. Furthermore, when patients recalled their QOL about a previous time, their recall may have been negatively biased. Clinical implications of results are discussed. Future work is needed because subjective QOL is an important outcome measure in therapeutic trials. © 2008 Movement Disorder Society  相似文献   

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