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Impact of Off-Time on Quality of Life in Parkinson's Patients and Their Caregivers: Insights from Social Media. 下班时间对帕金森病患者及其照顾者生活质量的影响:来自社交媒体的见解。
IF 3.2 4区 医学 Q3 CLINICAL NEUROLOGY Pub Date : 2022-01-01 DOI: 10.1155/2022/1800567
Philippe Damier, Emily J Henderson, Jesús Romero-Imbroda, Laura Galimam, Nick Kronfeld, Tobias Warnecke

Introduction: In Parkinson's disease (PD), the quality of life of both patients and caregivers is affected. While key issues relating to quality of life may not emerge in conversations with healthcare professionals (HCPs), unguarded social media conversations can provide insight into how people with Parkinson's disease (PwPD) and their caregivers are affected. We conducted a qualitative and quantitative netnographic study of PD conversations posted on social media sites over a 12-month period.

Objective: To identify key themes and issues for PwPD.

Methods: Using predefined and piloted search terms, we identified 392,962 social media posts (between March 31, 2020, and March 31, 2021, for the UK and France, and between September 30, 2019, and March 31, 2021, for Italy, Spain, and Germany). A random sample of these posts was then analyzed using natural language processing (NLP), and quantitative, qualitative,in-depth contextual analysis was also performed.

Results: Key themes that emerged in the PD conversation related to the changing experience of symptoms over time are the physical, emotional, and cognitive impact of symptoms, the management and treatment of PD, disease awareness among the general public, and the caregiver burden. The emotional impact of motor symptoms on PwPD is significant, particularly when symptoms increase and PwPD lose their independence, which may exacerbate existing anxiety and depression. Nonmotor symptoms can also compound the difficulties with managing the physical impact of motor symptoms. The burden of nonmotor symptoms is felt by both PwPD and their caregivers, with the impact of nonmotor symptoms on cognitive processes particularly frustrating for caregivers. The experience of off-time was also featured in the online conversation. Some PwPD believe there is a lack of adequate management from healthcare professionals, who may not appreciate their concerns or take sufficient time to discuss their needs.

Conclusion: This study identified key themes that PwPD and their caregivers discuss online. These findings help signpost issues of importance to PwPD and areas in which their care may be improved.

在帕金森病(PD)中,患者和护理者的生活质量都受到影响。虽然在与医疗保健专业人员(HCPs)的对话中可能不会出现与生活质量有关的关键问题,但毫无防备的社交媒体对话可以让我们深入了解帕金森病患者(PwPD)及其照顾者是如何受到影响的。我们对社交媒体网站上发布的PD对话进行了为期12个月的定性和定量网络研究。目的:确定PwPD的主要主题和议题。方法:使用预定义和试点搜索词,我们确定了392,962个社交媒体帖子(英国和法国在2020年3月31日至2021年3月31日之间,意大利、西班牙和德国在2019年9月30日至2021年3月31日之间)。然后使用自然语言处理(NLP)对这些帖子的随机样本进行分析,并进行定量,定性,深入的上下文分析。结果:PD对话中出现的与症状随时间变化的经历相关的关键主题是症状对身体、情绪和认知的影响,PD的管理和治疗,公众的疾病意识,以及护理人员的负担。运动症状对PwPD的情绪影响是显著的,特别是当症状增加和PwPD失去独立性时,这可能会加剧现有的焦虑和抑郁。非运动症状也会使控制运动症状对身体影响的困难复杂化。PwPD及其护理人员都感受到非运动症状的负担,非运动症状对认知过程的影响尤其令护理人员感到沮丧。在线对话中也提到了下班的经历。有些残疾人士认为医护专业人员缺乏足够的管理,他们可能不理解他们的关切,或没有花足够的时间讨论他们的需要。结论:本研究确定了PwPD及其护理人员在线讨论的关键主题。这些研究结果有助于为残疾人士指明重要的问题,以及他们可以在哪些方面得到改善。
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引用次数: 0
Nomogram for Prediction of Postoperative Delirium after Deep Brain Stimulation of Subthalamic Nucleus in Parkinson's Disease under General Anesthesia. 帕金森病全身麻醉下丘脑下核深部脑刺激术后谵妄的Nomogram预测。
IF 3.2 4区 医学 Q3 CLINICAL NEUROLOGY Pub Date : 2022-01-01 DOI: 10.1155/2022/6915627
Yu-Ting Ling, Qian-Qian Guo, Si-Min Wang, Li-Nan Zhang, Jin-Hua Chen, Yi Liu, Ruo-Heng Xuan, Bo Qu, Li-Ge Liu, Zhi-Shuang Wen, Jia-Kun Xu, Lu-Lu Jiang, Wen-Biao Xian, Bin Wu, Chang-Ming Zhang, Ling Chen, Jin-Long Liu, Nan Jiang

Introduction: Postoperative delirium can increase cognitive impairment and mortality in patients with Parkinson's disease. The purpose of this study was to develop and internally validate a clinical prediction model of delirium after deep brain stimulation of the subthalamic nucleus in Parkinson's disease under general anesthesia.

Methods: We conducted a retrospective observational cohort study on the data of 240 patients with Parkinson's disease who underwent deep brain stimulation of the subthalamic nucleus under general anesthesia. Demographic characteristics, clinical evaluation, imaging data, laboratory data, and surgical anesthesia information were collected. Multivariate logistic regression was used to develop the prediction model for postoperative delirium.

Results: A total of 159 patients were included in the cohort, of which 38 (23.90%) had postoperative delirium. Smoking (OR 4.51, 95% CI 1.56-13.02, p < 0.01) was the most important risk factor; other independent predictors were orthostatic hypotension (OR 3.42, 95% CI 0.90-13.06, p=0.07), inhibitors of type-B monoamine oxidase (OR 3.07, 95% CI 1.17-8.04, p=0.02), preoperative MRI with silent brain ischemia or infarction (OR 2.36, 95% CI 0.90-6.14, p=0.08), Hamilton anxiety scale score (OR 2.12, 95% CI 1.28-3.50, p < 0.01), and apolipoprotein E level in plasma (OR 1.48, 95% CI 0.95-2.29, p=0.08). The area under the receiver operating characteristic curve (AUC) was 0.76 (95% CI 0.66-0.86). A nomogram was established and showed good calibration and clinical predictive capacity. After bootstrap for internal verification, the AUC was 0.74 (95% CI 0.66-0.83).

Conclusion: This study provides evidence for the independent inducing factors of delirium after deep brain stimulation of the subthalamic nucleus in Parkinson's disease under general anesthesia. By predicting the development of delirium, our model may identify high-risk groups that can benefit from early or preventive intervention.

术后谵妄可增加帕金森病患者的认知功能障碍和死亡率。本研究的目的是建立并内部验证帕金森病全身麻醉下丘脑下核深部脑刺激后谵妄的临床预测模型。方法:对240例帕金森病患者在全身麻醉下行丘脑下核深部脑刺激的资料进行回顾性观察队列研究。收集患者的人口学特征、临床评价、影像学资料、实验室资料和手术麻醉信息。采用多因素logistic回归建立术后谵妄预测模型。结果:共纳入159例患者,其中38例(23.90%)出现术后谵妄。吸烟是最重要的危险因素(OR 4.51, 95% CI 1.56 ~ 13.02, p < 0.01);其他独立预测因子为直立性低血压(OR 3.42, 95% CI 0.90-13.06, p=0.07)、b型单胺氧化酶抑制剂(OR 3.07, 95% CI 1.17-8.04, p=0.02)、术前MRI无症状脑缺血或梗死(OR 2.36, 95% CI 0.90-6.14, p=0.08)、汉密尔顿焦虑量表评分(OR 2.12, 95% CI 1.28-3.50, p < 0.01)和血浆载脂蛋白E水平(OR 1.48, 95% CI 0.95-2.29, p=0.08)。受试者工作特征曲线下面积(AUC)为0.76 (95% CI 0.66 ~ 0.86)。建立了nomogram,具有良好的校准和临床预测能力。bootstrap内部验证后,AUC为0.74 (95% CI 0.66-0.83)。结论:本研究为帕金森病全身麻醉下丘脑下核深度脑刺激后谵妄的独立诱发因素提供了证据。通过预测谵妄的发展,我们的模型可以确定高危人群,可以从早期或预防性干预中受益。
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引用次数: 0
Onset of Postural Instability in Parkinson's Disease Depends on Age rather than Disease Duration. 帕金森病患者体位不稳定的发病与年龄有关,而与病程无关。
IF 3.2 4区 医学 Q3 CLINICAL NEUROLOGY Pub Date : 2022-01-01 DOI: 10.1155/2022/6233835
Denise Becker, Angelina Maric, Simon J Schreiner, Fabian Büchele, Christian R Baumann, Daniel Waldvogel

Background: Postural instability and falls are considered a major factor of impaired quality of life in patients with advanced Parkinson's disease (PD). The knowledge of the time at which postural instability occurs will help to provide the evidence required to introduce fall-prevention strategies at the right time in PD.

Objective: To investigate whether postural instability of patients with different age at disease onset is associated with age or with disease duration of PD.

Methods: Patients diagnosed with sporadic PD between 1991 and 2017 and postural instability (according to the International Parkinson and Movement Disorder Society Unified Parkinson's Disease Rating Scale (MDS-UPDRS) part III, item 3.12 postural instability) were included, with strict inclusion criteria including regular follow-ups, agreement on data use, and exclusion of comorbidities affecting the free stand.

Results: Applying these strict inclusion criteria, we included 106 patients. Those younger than 50 years at PD onset took significantly longer to develop postural instability (n = 23 patients, median: 18.4 years) compared with patients with later onset of PD (50-70 years, n = 66, median: 14.2 years, p < 0.001; and >70 years, n = 17, median: 5.7 years, p < 0.001, Kruskal-Wallis test followed by Dunn's multiple comparisons test). There was no association between total MDS-UPDRS III (as a measure of motor symptom severity) at onset of postural instability.

Conclusions: In PD, postural instability is primarily associated with the age of the patient and not with disease duration.

背景:体位不稳定和跌倒被认为是晚期帕金森病患者生活质量受损的主要因素。了解姿势不稳定发生的时间将有助于提供必要的证据,以便在适当的时间引入预防跌倒的策略。目的:探讨不同发病年龄PD患者的体位不稳是否与年龄或病程有关。方法:纳入1991 - 2017年间诊断为散发性PD且体位不稳定的患者(根据国际帕金森与运动障碍学会统一帕金森病评定量表(MDS-UPDRS)第三部分第3.12项体位不稳定),严格的纳入标准包括定期随访、数据使用一致、排除影响自由支架的合并症。结果:按照严格的纳入标准,我们纳入了106例患者。与晚发PD患者(50-70岁,n = 66,中位数:14.2年,p < 0.001)相比,发病年龄小于50岁的PD患者发生体位不稳定的时间明显更长(n = 23例,中位数:18.4年);>70岁,n = 17,中位数:5.7岁,p < 0.001, Kruskal-Wallis检验后再进行Dunn多重比较检验)。总MDS-UPDRS III(作为运动症状严重程度的衡量指标)在姿势不稳定发作时没有关联。结论:在PD中,姿势不稳定主要与患者的年龄有关,而与病程无关。
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引用次数: 2
Perspectives on Care for Late-Stage Parkinson's Disease. 晚期帕金森病的护理展望。
IF 3.2 4区 医学 Q3 CLINICAL NEUROLOGY Pub Date : 2021-01-01 DOI: 10.1155/2021/9475026
Kristina Rosqvist, Marianne Kylberg, Charlotte Löfqvist, Anette Schrag, Per Odin, Susanne Iwarsson

In the late stage of Parkinson's disease (PD), there is an increasing disease burden not only for the patients but also for their informal caregivers and the health and social services systems. The aim of this study was to explore experiences of late-stage PD patients' and their informal caregivers' satisfaction with care and support, in order to better understand how they perceive the treatment and care they receive. This qualitative substudy was part of the longitudinal European multicentre Care of Late Stage Parkinsonism (CLaSP) project. Individual semistructured interviews were conducted with patients (n = 11) and informal caregivers (n = 9) in Sweden. Data were analysed through the content analysis technique. The final analyses generated one main category: "We are trying to get by both with and without the formal care" and five subcategories: "Availability of health care is important for managing symptoms and everyday life"; "Dependence on others and scheduled days form everyday life"; "There is a wish to get adequate help when it is needed"; "Mixed feelings on future housing and respite care"; and "Family responsibility and loyalty for a functioning everyday life". Having regular contact with PD-specialised health care was perceived as important. Greater access to physiotherapy was wished for. Maintaining autonomy was perceived as important by patients, in both home health care and a future residential care setting. Responsibility and loyalty between spouses and support from children enabled everyday life to carry on at home, indicating a vulnerability for those without an informal caregiver. The results suggest that regular access to PD-specialised health care is important and that a specialised and multidisciplinary approach to the management of PD symptomatology is likely necessary. Non-PD-specialised staff in home health care and residential care facilities should regularly be given opportunities to obtain PD-specific education and information.

在帕金森病(PD)的晚期,不仅对患者,而且对他们的非正式照顾者以及卫生和社会服务系统都有越来越大的疾病负担。本研究旨在探讨晚期PD患者及其非正式照顾者对护理和支持的满意度体验,以更好地了解他们对所接受的治疗和护理的看法。该定性子研究是欧洲多中心晚期帕金森病护理(CLaSP)纵向研究项目的一部分。在瑞典,对患者(n = 11)和非正式护理人员(n = 9)进行了个人半结构化访谈。通过内容分析技术对数据进行分析。最后的分析产生了一个主要类别:“我们正在努力通过有和没有正式护理”和五个子类别:“获得卫生保健对控制症状和日常生活很重要”;“对他人的依赖和安排好的日子构成了日常生活”;“人们希望在需要的时候得到足够的帮助”;“对未来住房和临时护理的复杂感受”;以及“对正常日常生活的家庭责任和忠诚”。定期接触pd专业保健服务被认为是重要的。人们希望有更多的机会接受物理治疗。在家庭保健和未来的住宿护理环境中,患者认为保持自主权是重要的。配偶之间的责任和忠诚以及孩子的支持使家庭的日常生活得以继续,这表明那些没有非正式照顾者的人很容易受到伤害。结果表明,定期获得PD专业医疗保健是重要的,并且可能需要一种专门和多学科的方法来管理PD症状。家庭保健和寄宿护理机构的非pd专业人员应定期获得pd专业教育和信息的机会。
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引用次数: 12
Lifestyle Factors and Parkinson's Disease Risk in a Rural New England Case-Control Study. 新英格兰农村病例对照研究中的生活方式因素与帕金森病风险
IF 3.2 4区 医学 Q3 CLINICAL NEUROLOGY Pub Date : 2021-01-01 DOI: 10.1155/2021/5541760
Angeline S Andrew, Faith L Anderson, Stephen L Lee, Katharine M Von Herrmann, Matthew C Havrda

Introduction: Parkinson's disease (PD) is an age-related neurodegenerative disease likely caused by complex interactions between genetic and environmental risk factors. Exposure to pesticides, toxic metals, solvents, and history of traumatic brain injury have been implicated as environmental risk factors for PD, underscoring the importance of identifying risk factors associated with PD across different communities.

Methods: We conducted a questionnaire-based case-control study in a rural area on the New Hampshire/Vermont border, enrolling PD patients and age- and sex-matched controls from the general population between 2017 and 2020. We assessed frequent participation in a variety of recreational and occupational activities and surveyed potential chemical exposures.

Results: Suffering from "head trauma or a concussion" prior to diagnosis was associated with a fourfold increased risk of PD. Adjustment for head trauma negated any risk of participation in "strenuous athletic activities." We observed a 2.7-fold increased risk of PD associated with activities involving lead (adjusted p=0.038).

Conclusion: Implicating these factors in PD risk favors public health efforts in exposure mitigation while also motivating future work mechanisms and intervention opportunities.

帕金森病(PD)是一种与年龄相关的神经退行性疾病,可能是遗传和环境危险因素复杂相互作用的结果。暴露于杀虫剂、有毒金属、溶剂和创伤性脑损伤史被认为是帕金森病的环境危险因素,强调了在不同社区中识别与帕金森病相关的危险因素的重要性。方法:我们在新罕布什尔州/佛蒙特州边境的农村地区进行了一项基于问卷的病例对照研究,在2017年至2020年期间从普通人群中招募了PD患者和年龄和性别匹配的对照组。我们评估了频繁参与各种娱乐和职业活动的情况,并调查了潜在的化学接触。结果:诊断前患有“头部创伤或脑震荡”与PD风险增加四倍相关。头部创伤的调整否定了参加“剧烈运动活动”的任何风险。我们观察到与含铅活动相关的PD风险增加2.7倍(校正p=0.038)。结论:将这些因素与帕金森病风险联系起来,有利于减少暴露的公共卫生努力,同时也激发了未来的工作机制和干预机会。
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引用次数: 1
Social Symptoms of Parkinson's Disease. 帕金森病的社交症状
IF 3.2 4区 医学 Q3 CLINICAL NEUROLOGY Pub Date : 2020-12-31 eCollection Date: 2020-01-01 DOI: 10.1155/2020/8846544
Margaret T M Prenger, Racheal Madray, Kathryne Van Hedger, Mimma Anello, Penny A MacDonald

Parkinson's disease (PD) is typically well recognized by its characteristic motor symptoms (e.g., bradykinesia, rigidity, and tremor). The cognitive symptoms of PD are increasingly being acknowledged by clinicians and researchers alike. However, PD also involves a host of emotional and communicative changes which can cause major disruptions to social functioning. These incude problems producing emotional facial expressions (i.e., facial masking) and emotional speech (i.e., dysarthria), as well as difficulties recognizing the verbal and nonverbal emotional cues of others. These social symptoms of PD can result in severe negative social consequences, including stigma, dehumanization, and loneliness, which might affect quality of life to an even greater extent than more well-recognized motor or cognitive symptoms. It is, therefore, imperative that researchers and clinicans become aware of these potential social symptoms and their negative effects, in order to properly investigate and manage the socioemotional aspects of PD. This narrative review provides an examination of the current research surrounding some of the most common social symptoms of PD and their related social consequences and argues that proactively and adequately addressing these issues might improve disease outcomes.

帕金森病(PD)的典型特征是其特有的运动症状(如运动迟缓、僵硬和震颤)。帕金森病的认知症状越来越被临床医生和研究人员所认可。然而,PD还涉及一系列情绪和沟通的变化,这些变化可能导致社会功能的严重中断。这些障碍包括产生情绪性面部表情(即面部掩蔽)和情绪性言语(即构音障碍)的问题,以及识别他人的言语和非言语情感线索的困难。PD的这些社会症状可能导致严重的负面社会后果,包括耻辱、非人性化和孤独感,这可能比更广为人知的运动或认知症状更严重地影响生活质量。因此,研究人员和临床医生必须意识到这些潜在的社会症状及其负面影响,以便正确调查和管理PD的社会情感方面。本文综述了PD最常见的社会症状及其相关社会后果的研究现状,并认为积极、充分地解决这些问题可能会改善疾病的预后。
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引用次数: 17
Therapeutic Role of Protein Tyrosine Phosphatase 1B in Parkinson's Disease via Antineuroinflammation and Neuroprotection In Vitro and In Vivo. 蛋白酪氨酸磷酸酶1B通过体外和体内抗神经炎症和神经保护治疗帕金森病的作用
IF 3.2 4区 医学 Q3 CLINICAL NEUROLOGY Pub Date : 2020-12-29 eCollection Date: 2020-01-01 DOI: 10.1155/2020/8814236
Chien-Wei Feng, Nan-Fu Chen, Te-Fu Chan, Wu-Fu Chen

Parkinson's disease (PD) is one of the most widespread neurodegenerative diseases. However, the currently available treatments could only relieve symptoms. Novel therapeutic targets are urgently needed. Several previous studies mentioned that protein tyrosine phosphatase 1B (PTP1B) acted as a negative regulator of the insulin signal pathway and played a significant role in the inflammation process. However, few studies have investigated the role of PTP1B in the central nervous system. Our study showed that suramin, an inhibitor of PTP1B, could improve neuronal damage. It could significantly attenuate the interferon-gamma-induced upregulation of proinflammatory cytokines, including inducible nitric oxide synthase (iNOS), cyclooxygenase-2 (COX-2), and nuclear factor kappa-light-chain-enhancer of activated B cells (NF-κB). It enhanced M2 type microglia markers, such as arginase-1 and Ym-1 in BV2 murine microglial cells. PTP1B inhibition also reversed 6-hydroxydopamine- (6-OHDA-) induced downregulation of phospho-cAMP response element-binding protein (p-CREB) and brain-derived neurotrophic factor (BDNF) in SH-SY5Y cells. Besides, we knocked down and overexpressed PTP1B in the SH-SY5Y cells to confirm its role in neuroprotection. We also verified the effect of suramin in the zebrafish PD model. Treatment with suramin could significantly reverse 6-OHDA-induced locomotor deficits and improved tyrosine hydroxylase (TH) via attenuating endoplasmic reticulum (ER) stress biomarkers. These results support that PTP1B could potentially regulate PD via antineuroinflammation and antiapoptotic pathways.

帕金森病(PD)是最广泛的神经退行性疾病之一。然而,目前可用的治疗方法只能缓解症状。迫切需要新的治疗靶点。此前多项研究提到蛋白酪氨酸磷酸酶1B (protein tyrosine phosphatase 1B, PTP1B)作为胰岛素信号通路的负调控因子,在炎症过程中发挥重要作用。然而,很少有研究调查PTP1B在中枢神经系统中的作用。我们的研究表明,PTP1B抑制剂苏拉明可以改善神经元损伤。可显著减弱干扰素γ诱导的促炎细胞因子上调,包括诱导型一氧化氮合酶(iNOS)、环氧合酶-2 (COX-2)、活化B细胞核因子κB轻链增强子(NF-κB)。增强BV2小鼠小胶质细胞中M2型小胶质细胞标记物精氨酸酶-1和m-1的表达。PTP1B抑制还逆转了6-羟多巴胺- (6-OHDA-)诱导的SH-SY5Y细胞中磷酸化- camp反应元件结合蛋白(p-CREB)和脑源性神经营养因子(BDNF)的下调。此外,我们在SH-SY5Y细胞中敲低并过表达PTP1B以证实其在神经保护中的作用。我们还验证了苏拉明在斑马鱼PD模型中的作用。苏拉明治疗可以通过降低内质网应激生物标志物显著逆转6-羟色胺诱导的运动缺陷和改善酪氨酸羟化酶(TH)。这些结果支持PTP1B可能通过抗神经炎症和抗凋亡途径调控PD。
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引用次数: 9
Autonomic Dysfunctions in Parkinson's Disease: Prevalence, Clinical Characteristics, Potential Diagnostic Markers, and Treatment. 帕金森病的自主神经功能障碍:患病率、临床特征、潜在诊断标记和治疗。
IF 3.2 4区 医学 Q3 CLINICAL NEUROLOGY Pub Date : 2020-12-24 eCollection Date: 2020-01-01 DOI: 10.1155/2020/8740732
Zhe Zhang, Sheng-Di Chen

Parkinson's disease (PD) is a common neurodegenerative disease in the middle-aged and the elderly. Symptoms of autonomic dysfunctions are frequently seen in PD patients, severely affecting the quality of life. This review summarizes the epidemiology, clinical manifestations, and treatment options of autonomic dysfunctions. The clinical significance of autonomic dysfunctions in PD early diagnosis and differential diagnosis is also discussed.

帕金森病(PD)是一种常见于中老年人的神经退行性疾病。自主神经功能障碍的症状在PD患者中很常见,严重影响生活质量。本文综述了自主神经功能障碍的流行病学、临床表现和治疗方案。并讨论了自主神经功能障碍在帕金森病早期诊断和鉴别诊断中的临床意义。
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引用次数: 5
Self-Management Components as Experienced by People with Parkinson's Disease and Their Carers: A Systematic Review and Synthesis of the Qualitative Literature. 帕金森病患者及其照护者所经历的自我管理成分:定性文献的系统回顾和综合。
IF 3.2 4区 医学 Q3 CLINICAL NEUROLOGY Pub Date : 2020-12-15 eCollection Date: 2020-01-01 DOI: 10.1155/2020/8857385
Remco Tuijt, Aylin Tan, Megan Armstrong, Jennifer Pigott, Joy Read, Nathan Davies, Kate Walters, Anette Schrag

Background: Self-management strategies are important in healthcare for people with Parkinson's to improve daily living. There is limited evidence on effectiveness in Parkinson's, and the active components of effective self-management strategies are uncertain. This review aims to identify and synthesise the qualitative evidence regarding the experiences of self-management components by people with Parkinson's and their carers.

Methods: MEDLINE, PsycINFO, Embase, Web of Science, and CINAHL were searched from inception to July 8, 2020, for qualitative research concerning self-management for people with Parkinson's. Data were coded and thematically synthesised using NVivo. Findings. Of 9547 search results, six papers were included in the final thematic synthesis. The studies reviewed consisted of 147 participants: 104 were people with Parkinson's and 43 were carers. Seven main themes were derived concerning self-management of people with Parkinson's: (1) medication management, (2) physical exercise, (3) self-monitoring techniques, (4) psychological strategies, (5) maintaining independence, (6) encouraging social engagement, and (7) providing knowledge and information. These components should be incorporated as relevant strategies and techniques and should be specific as well as tailored to different stages of the disease. Discussion. Self-management programmes for people with Parkinson's should include the seven themes presented as part of this review and pay particular attention to presenting relevant information and skills as they relate to different stages of the disease. Tailoring information and social engagement were two components that required specific attention in order to engage people with Parkinson's effectively.

背景:自我管理策略对于改善帕金森病患者的日常生活非常重要。关于帕金森病有效性的证据有限,有效的自我管理策略的积极成分也不确定。本综述旨在识别和综合关于帕金森患者及其护理人员自我管理组成部分的经验的定性证据。方法:检索MEDLINE、PsycINFO、Embase、Web of Science和CINAHL,检索自成立至2020年7月8日有关帕金森患者自我管理的定性研究。使用NVivo对数据进行编码和主题合成。发现。在9547个检索结果中,有6篇论文被纳入最终的专题综合。这些研究包括147名参与者:104名帕金森氏症患者,43名护理人员。关于帕金森患者自我管理的七个主要主题是:(1)药物管理,(2)体育锻炼,(3)自我监控技巧,(4)心理策略,(5)保持独立性,(6)鼓励社会参与,(7)提供知识和信息。这些组成部分应作为相关的战略和技术加以纳入,并应具体到疾病的不同阶段。讨论。帕金森病患者的自我管理规划应包括本综述中提出的七个主题,并特别注意提供与疾病不同阶段有关的相关信息和技能。定制信息和社会参与是需要特别关注的两个组成部分,以便有效地吸引帕金森患者。
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引用次数: 22
Development and Initial Validation of the Chinese Version of the Florida Surgical Questionnaire for Parkinson's Disease. 帕金森氏病佛罗里达手术问卷中文版的编制与初步验证。
IF 3.2 4区 医学 Q3 CLINICAL NEUROLOGY Pub Date : 2020-12-12 eCollection Date: 2020-01-01 DOI: 10.1155/2020/8811435
Tao Wang, Yiwang Zhang, Yixin Pan, Linbin Wang, Chencheng Zhang, Jun Liu, Liuguan Bian, Bomin Sun, Dianyou Li

Background: Deep brain stimulation (DBS) for Parkinson's disease (PD) has evolved as a well-established treatment in neurosurgery, and identifying appropriate surgical candidates could contribute to better DBS outcomes. The Florida Surgical Questionnaire for Parkinson Disease (FLASQ-PD) is a reasonable screening tool for assessing DBS candidacy in PD patients; however, a Chinese version of FLASQ-PD is needed for functional neurosurgery units in China. In this study, we translated the FLASQ-PD to Chinese and assessed its reliability and validity for Chinese PD patients.

Methods: The FLASQ-PD was translated before the study formally started. A single-center retrospective analysis of FLASQ-PD was performed at the Ruijin Hospital, affiliated with Shanghai Jiaotong University School of Medicine, between July and December 2019. The Unified Parkinson Disease Rating Scale III (UPDRS-III) was also used to assess PD patients on and off medication. All patients were evaluated for surgical candidacy by specialists.

Results: Overall, 115 PD patients, 25 with parkinsonism and six with multiple system atrophy were consecutively included. Internal consistency of the Chinese FLASQ-PD was roughly adequate (Cronbach's alpha = 0.664). There were significant differences in mean total scores of the Chinese FLASQ-PD between the diagnostic (Kruskal-Wallis H value = 37.450, p ≤ 0.001) and surgery-candidacy groups (H = 48.352, p ≤ 0.001). Drug improvements in UPDRS-III scores were mildly correlated with the Chinese FLASQ-PD scores in the surgery-ready group (Pearson correlation = 0.399, p=0.001).

Conclusions: The Chinese FLASQ-PD, which is a simple and efficient screening tool for clinicians, was developed and initially validated in this retrospective single-center study.

背景:脑深部电刺激(DBS)治疗帕金森病(PD)已经发展成为一种完善的神经外科治疗方法,确定合适的手术候选人可能有助于更好的DBS结果。佛罗里达帕金森病手术问卷(FLASQ-PD)是评估PD患者DBS候选性的合理筛选工具;然而,中国功能神经外科单位需要中文版的FLASQ-PD。在本研究中,我们将FLASQ-PD翻译成中文,并评估其对中国PD患者的信度和效度。方法:在研究正式开始前翻译FLASQ-PD。于2019年7月至12月在上海交通大学医学院附属瑞金医院对FLASQ-PD进行单中心回顾性分析。统一帕金森病评定量表III (UPDRS-III)也用于评估PD患者的服药和停药情况。所有患者均由专家评估手术候选性。结果:共纳入PD患者115例,帕金森病患者25例,多系统萎缩患者6例。中国的FLASQ-PD内部一致性大致足够(Cronbach’s alpha = 0.664)。诊断组(Kruskal-Wallis H值= 37.450,p≤0.001)与候选手术组(H值= 48.352,p≤0.001)的中国FLASQ-PD平均总分差异有统计学意义。手术准备组UPDRS-III评分的药物改善与中国FLASQ-PD评分轻度相关(Pearson相关性= 0.399,p=0.001)。结论:本回顾性单中心研究开发并初步验证了中文FLASQ-PD,为临床医生提供了一种简单有效的筛查工具。
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引用次数: 1
期刊
Parkinson's Disease
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