Predictors of general and health-related quality of life in Parkinson's disease and related disorders including caregiver perspectives

IntroductionOur understanding of the determinants of quality of life (QOL) in people living with Parkinson's disease and related disorders (PDRD) has grown remarkably in the past decade. However, several areas remain understudied including determinants of general vs. health-related QOL, determinants in high-need patients, drivers of perceptions of caregivers vs. patients, and exploration of potential determinants outside of the traditional medical model.MethodsThis was a cross-sectional study of 210 PDRD patients and 175 caregivers who completed a battery of measures regarding general QOL (QOL-Alzheimer's disease; QOL-AD), health-related QOL (Parkinson's disease Questionnaire; PDQ-39), cognitive function, mood, grief, spiritual wellbeing, symptom burden, disease severity, disease stage, overall function, socioeconomic status, and healthcare utilization. Elastic net regularization modeling of variables significantly associated with our outcomes of interest were performed to determine predictors of general QOL, compare predictors of general vs. health-related QOL, and compare predictors of patient and caregiver perspectives on patient general QOL.ResultsGeneral QOL was associated with spiritual wellbeing, depression, cognitive function, presence of a caregiver, and recent emergency department visits. In contrast, health-related QOL was associated with grief, symptom burden, income, disease stage, and utilization of counseling services. Caregiver ratings of patient general QOL were associated with patient symptom burden, patient grief, patient global function, caregiver burden, and caregiver spiritual wellbeing.ConclusionsThere are notable differences in the predictors of general QOL, health-related QOL and caregiver perspectives on patient general QOL. These differences have important implications for clinical research and models of clinical care.     

Trends of inpatient palliative care use among hospitalized patients with Parkinson's disease

IntroductionPalliative care in Parkinson's Disease (PD) is an effective intervention to improve quality of life, although historically, access and availability have been very restricted.MethodsWe performed a retrospective cohort study using the National Inpatient Sample (NIS) data from 2007 to 2014. Diagnostic codes were used to identify patients with PD and palliative care referral. Trends were calculated and logistic analysis performed to identify predictors of palliative care use.ResultsWe identified 397,963 hospitalizations from 2007 to 2014 for patients with PD. Of these, 10,639 (2.67%) were referred to palliative care. The rate of consultation increased from 0.85% in 2007 to 4.49% in 2014. For 1 unit in year increase, there was 1.23 time the odds of receiving palliative consultation (OR 1.23, CI 1.21–1.25, p < 0.0001). Hispanics (OR 0.90, CI 0.81–1.01, p = 0.0550), Black (OR 0.90, CI 0.81–1.01, p = 0.0747) and White patients had similar rates of referral after adjustment. Women were less likely to be referred to palliative care (OR 0.90, CI 0.87–0.94, p < 0.0001). Other factors strongly associated with a higher rate of referrals included private insurance when compared to Medicare (OR 2.14, CI 1.89–2.41, p < 0.0001) and higher income (OR 1.41, CI 1.30–1.53, p < 0.0001).ConclusionThere has been a significant increase in palliative care referrals among hospitalized patients with PD in the US, although the overall rate remains low. After controlling for confounders, racial and ethnic disparities were not found. Women, patients with Medicare/Medicaid, and those with lower income were less likely to be referred to palliative care.     

The prevalence of symptomatic orthostatic hypotension in patients with Parkinson's disease and atypical parkinsonism

Non-motor symptoms in Parkinson disease (PD) have been increasingly recognized as a major cause of declining health-related quality of life. We aimed to determine the prevalence of symptomatic orthostatic hypotension (OH) in patients with PD and atypical parkinsonism, and to evaluate the risk factors for OH in this population. We reviewed the records of 1318 patients diagnosed with PD or atypical parkinsonism at the Parkinson’s Disease Center and Movement Disorders Clinic, Baylor College of Medicine. The frequency of symptomatic OH was 81% (21/26) in patients with multiple system atrophy (MSA), 18% (198/1125) of PD patients, and 19% (31/167) of patients with non-MSA atypical parkinsonism. Among PD patients, those with symptoms of OH were significantly older (p = 0.001), had more advanced Hoehn & Yahr stage (p = 0.007), a longer duration of PD symptoms (p = 0.031), and a greater range between their highest and lowest sitting systolic and diastolic BPs (p = 0.0001) over time. In the atypical parkinsonism group, excluding MSA, patients with symptoms of OH were taking more anti-hypertensive medications than those without symptoms of OH (p = 0.043). On the other hand, MSA patients with symptoms of OH were less likely to be taking anti-hypertensive medications than those without symptoms (p = 0.035). In conclusion, symptomatic OH is a common cause of disability in patients with PD, atypical parkinsonian disorders, and especially in patients with MSA.     

Spared emotional perception in patients with Alzheimer's disease is associated with negative caregiver outcomes

Objectives: Caregivers (CGs) for patients with Alzheimer's disease (AD) often experience negative mental health and relationship outcomes. Additionally, emotional perception abilities are often compromised in early AD; the relationships between these deficits and CG outcomes are unclear. The present study investigated the relationship between emotional perception abilities in AD participants and CG well-being.

Methods: Participants included 28 individuals with AD, their spousal CGs, and 30 older controls (OCs). Patients and controls completed the Montreal Cognitive Assessment and Advanced Clinical Solutions: Social Perception subtest. CGs completed questionnaires related to relationship satisfaction, burden, depression, and patient neuropsychiatric symptoms and activities of daily living.

Results: The patient group performed significantly worse than OCs on measures of cognition and emotional perception. Several significant relationships emerged between AD participant emotional perception and CG outcomes. Higher CG depression was associated with greater overall emotional perception abilities (r = .39, p = .041). Caregiver burden was positively correlated with AD participants' ability to label the emotional tones of voices (r = .47, p = .015). Relationship satisfaction was not significantly correlated with emotional perception.

Discussion: This study replicated earlier findings of impaired emotional perception abilities in AD participants. However, preserved abilities in emotional perception were associated greater CG depression and burden. Interestingly, the CGs satisfaction with the marital relationship did not appear to be influenced by changes in emotional perception. Higher emotional engagement among couples in which one spouse has cognitive impairment may contribute to increased negative interactions and in turn a greater sense of burden and depression, while leaving the marital relationship preserved.     

帕金森病患者运动并发症的调查分析

目的 调查帕金森病(PD)患者中异动症及症状波动的发生率、分布情况以及影响因素.方法 详细记录患者资料,并进行统一帕会森病评分量表(UPDRS)、Hoehn＆Yahn(H-Y)分级评分.根据UPDRS Ⅳ记录患者有无异动症及症状波动.结果 122例患者接受左旋多巴治疗,疗程至少6个月.其中15例(12.3%)合并异动症,41例(33.6%)合并症状波动.异动症的独立影响因素为:发病年龄(OR=0.907,P<0.01)和左旋多巴总量(95%C/1.000～1.004,OR=1.002,P<0.05);症状波动的独立影响因素为:发病年龄(OR=0.922,P<0.05),接受左旋多巴治疗的时间(OR=1.234,P<0.05),左旋多巴总量(95%CI 1.002～1.008,OR=1.005,P<0.01)和H-Y分级(OR=1.869,P<0.05).结论 本组患者异动症及症状波动的发生率均低于欧洲调查结果,每日左旋多巴总最是异动症及症状波动的独立影响因素.添加其他药物辅助治疗而减少左旋多巴用量,可以减少运动并发症的发生.     

帕金森病患者的时间感知障碍

目的 探讨帕金森病(Pakinson's disease,PD)患者的时间感知障碍.方法 采用时距复制的检查方法,对32例原发性PD患者和32名健康对照者进行时间感知能力测试.结果 在3s的时间复制任务中,PD患者组在延迟1s[(2.15±0.34)s]和延迟5 s[(2.08±0.37)s]的情况下时间复制能力明显下降,表现为低估时间,与对照组[分别为(2.78±0.31)s和(2.74±0.32)s]相比差异均有统计学意义(t=-7.459、-7.533,均P＜0.01);在5 s的时间复制任务中,PD患者组在延迟1 s[(3.11±0.52)s]和延迟5 s[(2.96±0.54)s]的情况下时间复制能力较对照组[分别为(3.99±0.39)s和(4.05±0.40)s]亦有明显下降,表现为低估时间,差异均有统计学意义(t=-7.609、-9.120,均P＜0.01);但在600ms的时间复制中,PD患者组在延迟1 s[(0.90±0.18)s]和延迟5 s[(0.91±0.17)s]的情况下时间复制能力与对照组[分别为(0.91±0.18)s和(0.89±0.16)s]相比差异无统计学意义(t=0.347、-0.519,P=0.730、0.606).结论 PD患者存在时间感知障碍,主要表现为对秒以上长时距的低估,而对毫秒范围内的短时距感知无损伤.     

Dopaminergic neuronal dysfunction associated with parkinsonism in both a Gaucher disease patient and a carrier

A clinical association between Gaucher disease and parkinsonism has been demonstrated. We herein report a Japanese patient with type 3 Gaucher disease who was compound heterozygous for F213I and L444P mutations in the glucocerebrosidase gene while his father was heterozygous for the L444P mutation. They both presented with parkinsonism characterized by a predominance of akinetic-rigid signs and a favorable response to anti-Parkinson therapies. We investigated the dopaminergic neuronal function using positron emission tomography (PET) with radioligands, [(11)C] CFT and [(11)C] raclopride. PET studies of both patients demonstrated the [(11)C] CFT uptake to be severely decreased in the putamen and the caudate nucleus, however, the [(11)C] raclopride uptake was normal in the basal ganglia. Although the majority of Gaucher disease patients with parkinsonism tend to be refractory to anti-Parkinson therapies. The clinical features and the findings of the PET studies suggest that patients with parkinsonism associated with the mutation in the glucocerebrosidase gene, even in heterozygosis, may be related to the presynaptic dopaminergic neuronal dysfunction reported in Parkinson's disease. A PET study to evaluate the dopaminergic neuronal function in Gaucher disease would provide both a better understanding of the effects of anti-Parkinson therapies and a help to improve our ability to make an early diagnosis of parkinsonism associated with Gaucher disease.     

新发帕金森病的急性多巴反应性评价

目的：建立急性左旋多巴负荷试验用于鉴别新发帕金森病（PD）与新发帕金森综合征（PDS）患者,并筛选评价指标的临界值。方法：选择89例有PD样表现但未服用过左旋多巴的患者,根据临床诊断分为PD组（n=48）和PDS组（n=41）,进行了急性左旋多巴／卡比多巴（100／25mg）试验。根据两组患者统-PD评分运动分量表（UPDRS—Ⅲ）评分的平均最大改善率进行比较,并建立受试者工作特征（ROC）曲线,以该曲线上最大Youden指数对应的运动评分最大改善率作为临界值。结果：PD组在服用左旋多巴-卡比多巴后的平均UPDRS-Ⅲ评分平均最大改善率高于PDS组,差异有统计学意义（P〈0．01）。建立的ROC曲线在鉴别PD和PDS差异具有统计学意义,ROC曲线下面积为0．827（P〈0．01）,对应上网UPDRS运动评分改善率的最佳临界值为12．45％（Youden指数0．565,敏感度80．9％,特异度75．6％）。结论：急性左旋多巴-卡比多巴试验可作为PD疗效和诊断的一种辅助参考方法。     

Molecular imaging to track Parkinson's disease and atypical parkinsonisms: New imaging frontiers

Molecular imaging has proven to be a powerful tool for investigation of parkinsonian disorders. One current challenge is to identify biomarkers of early changes that may predict the clinical trajectory of parkinsonian disorders. Exciting new tracer developments hold the potential for in vivo markers of underlying pathology. Herein, we provide an overview of molecular imaging advances and how these approaches help us to understand PD and atypical parkinsonisms. © 2016 International Parkinson and Movement Disorder Society.     

吸烟对帕金森病患者嗅觉障碍的影响

目的探讨吸烟对帕金森病(PD)患者嗅觉障碍的影响。方法根据吸烟情况将167例PD患者(PD组)及100例正常人(正常对照组)分为吸烟亚组及不吸烟亚组。采用TT嗅觉测试液对入组者进行嗅素识别阈值测定。结果与正常对照组比较,PD组MMSE评分及蒙特利尔认知评估(Mo CA)评分显著降低(均P0.05),两组年龄、吸烟史及男性比率未见明显差异(均P0.05)。PD组嗅素识别阈显著高于正常对照组(t=6.785,P=0.000)。与PD吸烟亚组比较,不吸烟亚组嗅素识别阈显著升高(t=-3.000,P=0.003)。正常人吸烟亚组较不吸烟亚组嗅素识别阈值减低,但无统计学意义(t=0.784,P=0.435)。PD吸烟者嗅觉阈值与吸烟年限、吸烟总量无相关(r=-0.104,P=0.441;r=-0.156,P=0.246)。结论吸烟可能对PD患者嗅觉有保护作用,并且与吸烟年限、吸烟总量无关。     

帕金森病患者的情感淡漠及其相关因素分析

目的 探讨帕金森病情感淡漠的患病率、症状学特点及相关因素.方法 收集77例帕金森病患者和40名健康人分为病例组和对照组,使用Lille情感淡漠评定量表(LARS)分别对其进行情感淡漠评分.以-21分为界将病例组分为淡漠组和非淡漠组,对两组的年龄、性别、受教育程度、病程、运动症状、认知损害、抑郁、多巴胺能及精神科药物使用情况进行t检验、x2检验及Logistic 回归分析.结果 77例帕金森病患者中,情感淡漠的发生率为49.4％( 38/77),抑郁的发生率为46.8％( 36/77),其中不伴抑郁的情感淡漠发生率为14.3％ (11/77),情感淡漠同时伴有抑郁的发生率为35.1％ (27/77).在38例情感淡漠患者中,以认知型受损者为主占86.8％ (33/38).帕金森病患者淡漠组(n=38)和非淡漠组(n=39)在受教育程度、统一帕金森病评定量表( UPDRS)Ⅱ和Ⅲ评分、H-Y分级、蒙特利尔认知评估量表和汉密尔顿抑郁量表(HAMD)评分之间差异有统计学意义(t=2.309、-3.144、-4.000、-3.217、2.649、-3.909,均P＜0.05).在情感淡漠相关因素的Logistic回归分析中,依次进入方程的是HAMD评分、UPDRSⅡ和受教育程度.结论 帕金森病患者的情感淡漠发生率高,可独立于抑郁而单独存在,并且可能与患者的受教育程度、运动症状严重程度、认知损害程度及抑郁存在情况之间存在相关性.     

帕金森病患者伴发高同型半胱氨酸血症的相关因素分析

目的探讨帕金森病(Parkinson’s disease,PD)患者伴发高同型半胱氨酸血症(hyperhomocysteinemia,Hhcy)与左旋多巴(levodopa,L-dopa)治疗的关系。方法收集门诊154例PD患者,检测其同型半胱氨酸(Homocysteine,Hcy)的水平。高于正常值者列为研究组,正常值范围内为对照组,2组就年龄、性别、病程、L-dopa治疗情况、叶酸和维生素B12水平等进行对照分析。结果研究组使用L-dopa治疗者比例(62/76))明显高于对照组(44/78)(P0.01),而其他因素包括性别、年龄、病程、叶酸和维生素B12浓度对Hcy的升高而无明显影响(P0.05);治疗组血浆Hcy浓度(24.34±8.67)umol/L明显高于未治疗组(14.26±6.11)umol/L(P0.01)。结论L-dopa治疗可以导致PD患者的血浆Hcy水平升高,可能是PD患者伴发Hhcy的独立危险因素。     

帕金森病患者赌博冲动发生情况调查与分析

为探讨帕金森病患者赌博冲动的发生情况及其相关危险因素,采用赌博症状评价量表对167例帕金森病患者赌博症状进行评价,同时分析性别、年龄、病程、受教育程度、吸烟史、用药情况等可能的影响因素,并进行统计学分析.调查结果显示,我国帕金森病患者赌博冲动发生率较低,尚未发现相关危险因素.     

抑郁障碍对帕金森病患者生活质量的影响

分别采用抑郁自评量表和36条简明健康状况调查表评价100例原发性帕金森病患者的抑郁障碍和生活质量,结果显示,除生理职能差异无统计学意义外(P0.05),生理功能(P=0.001)、情感(P=0.000)、社会功能(P=0.007)、躯体疼痛(P=0.000)、精力(P=0.000)、精神健康(P=0.000)、一般健康(P=0.004)和总评分(P=0.000)差异均有统计学意义。提示抑郁障碍可以降低帕金森病患者的生活质量。     

帕金森病患者轻度认知功能损害

目的 探讨帕金森病(PD)患者伴轻度认知功能损害(MCI)即PD-MCI的特征及其相关因素.方法 采用多种量表[MMSE、Hoehn-Yahr分期、Webster评分、PD统一评分量表-运动(UPDRS-motor)及剑桥老年认知检查量表中文版(CAMCOG-C)]评估PD患者的病情严重程度、运动和认知功能;应用Petersen改良标准诊断PD-MCI.结果 89例PD患者中,认知正常(PDCOGNL)56例(63%),PD-MCI 20例(22%),PD痴呆(PDD)13例(15%).PD-MCI组较PDCOGNL组在定向、语言、记忆、注意、执行、思维、知觉等方面均存在明显损害,两组年龄和起病年龄差异无统计学意义,受教育程度差异有统计学意义(PD-MCI:4.4±4.3,PDCOGNL:7.1±4.9;q=3.270,P<0.05);PD-MCI组的年龄、起病年龄及受教育程度较PDD组差异均无统计学意义;而PDD组较PDCOGNL组在年龄、起病年龄、受教育程度等方面差异均有统计学意义(q=-4.913、-4.997、4.740,均P<0.01);3组间病程差异无统计学意义.Hoehn-Yahr分期、Webster评分及UPDRS-motor评分与PD认知功能均存在负相关.结论 PD-MCI是PD认知正常与PDD之间的过渡状态,存在多个区域的认知损害;高龄、起病年龄迟、受教育程度低可能是PD认知损害的危险因素;疾病严重程度及运动功能与PD认知功能存在着负相关.     

Moving towards home-based community-centred integrated care in Parkinson's disease

People living with Parkinson's disease (PwP) experience a wide range of motor and non-motor symptoms associated with increasing complexity of care delivery. A multispecialty approach has been presented as an intuitive solution for tailored and comprehensive care delivery. Nevertheless, past trials of both multidisciplinary or interdisciplinary care models in PD suggested no measurable change to a small benefit in quality of life (QoL) and failed to show economic sustainability. We propose a home-based community-centred integrated care (iCARE-PD) for PwP as a pragmatic solution to harness the potential of existing care resources using an integrated care strategy, enable self-management support and implement technology-enabled care. The iCARE-PD model is based on Freeman's concept of continuity of care and the expanded Chronic Care Model for organization of care strategies. A home-based community-centred integrated care has immediate implications for clinical practice, with potential benefits in rural areas or lower-income countries, by enhancing access to care with optimized costs. There is a need to establish which and how interventions may be used as an instrument of care in each local deployment of the iCARE-PD model. We put forward a multidisciplinary framework to generate the evidence supportive of its implementation as the standard of care in the future and delineate the core strategies to secure the implementation of this care approach across different health care systems to ensure feasibility and economic sustainability. We envision this model becoming a paradigm of personalized care transferable to people with atypical forms of neurodegenerative parkinsonism.     

早期帕金森病的模糊决策功能障碍

目的探讨早期帕金森病(Parkinson’s disease,PD)患者在概率不明确条件下的模糊决策能力是否受损,并分析该功能损害与其他认知功能的关系以及是否与基底节区病变有关。方法研究对象为年龄、性别匹配的早期PD患者(Hoehn-Yahr分级≤Ⅱ级)、右侧基底节梗死(right basal ganglia infarction,BGI)患者和正常对照各20名。采用蒙特利尔认知评估量表、Stroop字色测试等工具对进行背景认知功能测试,采用爱荷华博弈实验(Iowa Gambling Task,IGT)对各组进行模糊决策评测,分析IGT测试成绩与背景认知之间的相关性。结果3组Stroop测试成绩的差异有统计学意义(F=33.27,P<0.05),PD组(21.35±4.28)差于BGI组(13.30±3.21)和对照组(13.60±2.98)(P<0.05)。3组在IGT测试成绩差异亦有统计学意义(F=5.38,P<0.05),PD组总有利备择得分(48.95±7.01)低于BGI组(52.95±2.72)和正常对照组(53.15±2.43)(P<0.05)。BGI组的Stroop测试和模糊决策IGT测试成绩与对照组比较,差异均无统计学意义(P>0.05)。早期PD患者IGT测试成绩与Stroop测试成绩呈负相关(r=-0.65,P<0.05)。结论早期PD患者存在模糊决策障碍和执行功能障碍,两者间存在相关性。单纯基底节区脑梗死对模糊决策和执行功能无显著影响。PD患者模糊决策障碍可能源于基底节以外脑区损害。     

Reduced life-space of non-professional caregivers to Parkinson's disease patients with increased disease duration

Objective

To evaluate the impact of Parkinson's disease (PD) on unpaid, non-professional caregiver (CG) social relationships and related issues, as well as home-help services, over the time-course of the disease.

Materials and methods

Cross-sectional telephone survey using a structured questionnaire where CGs were divided into three groups with regard to care-giving/PD duration: 0–4, 5–10 and >11 years.

Results

404/451 CGs responded. Their relationships to friends, the patient, parents, other relatives, workmates and own children were impaired in 30%, 26%, 20%, 20%, 15% and 7% of the cases, respectively, with a significant increase in impaired parent and friends relations with the longest care-giving duration. More than half with the longest care-giving duration also experienced limitations in social activities, e.g. seeing friends and carrying out leisure activities. Of all CGs 11% used professional home-service help, with a mean of 8 h assistance/week, however with no increased effect on possibilities to social activities. Of the 30% of CGs below the age of 65, one-third was on early retirement or sick leave and 40% of the remaining two-thirds worked part-time due to the patient-care commitment. Caregivers still working reported no more possibilities to social activities.

Conclusions

Confinement caused by looking after PD patients may disorganize the life of the entire family and have adverse social consequences for unpaid CGs. This could disrupt the established balance within the family, limiting and narrowing the CGs’ life-space. The narrowed life-space of these CGs must be considered and acted upon when offering and planning healthcare.     

Cannabis in patients with Parkinson's disease in Argentina. A cross sectional study

We made an observational cross-sectional study to evaluate the prevalence of cannabis use, characteristics and results perceived by a group of PD patients. Semi-structured questionnaire was applied to patients. Until obtaining more information we suggest to incorporate into regular medical practice the question about the use of cannabis.