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Randomized Controlled Trial of Transcranial Direct Current Stimulation over the Supplementary Motor Area in Tourette Syndrome.
IF 2.6 4区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2024-11-29 DOI: 10.1002/mdc3.14285
Yasamin Mahjoub, Natalia Szejko, Liu Shi Gan, Janet Adesewa Adeoti, Michael A Nitsche, Carmelo M Vicario, Tamara M Pringsheim, Davide Martino

Background: Transcranial direct current stimulation (tDCS) over the supplementary motor area (SMA) has shown promise in Tourette syndrome (TS), but previous studies were limited in size and stimulation duration.

Objective: The aim was to explore the efficacy and safety of multiple sessions of cathodal tDCS over the bilateral SMA on tic severity in TS.

Methods: A double-blind, randomized, sham-controlled trial 1 mA cathodal tDCS over bilateral SMA was performed in participants with TS older than 16 years. The intervention involved two 20-min periods of stimulation with either sham or active tDCS per day, over 5 consecutive days, during which participants actively suppressed tics. Tic severity was measured using the Yale Global Tic Severity Scale Total Tic Severity (YGTSS-TTS, primary outcome) score at baseline, day 5 (visit 5), and 1 week later (visit 6). Questionnaires focusing on comorbidities were performed at baseline and visit 6.

Results: Twenty-four participants were randomly assigned (12 active, 12 sham; 8 women; median age: 26). We observed a significant effect of visit on YGTSS-TSS, but no significant effect of treatment or treatment × visit interaction emerged. In contrast, a statistically significant effect of the treatment × visit interaction was observed for the motor tic subscore, with significantly larger improvement in the active arm. Furthermore, we detected a significantly larger decrease in premonitory urge intensity at visit 6 after active stimulation. No effect was detected on severity of comorbidities.

Conclusions: This preliminary study suggests that bilateral tDCS over the SMA provides small, but significant benefits in reducing motor tic severity in TS.

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引用次数: 0
A Heat Sensitivity Scale for People with Parkinson's Disease. 帕金森病患者热敏感度量表
IF 2.6 4区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2024-11-27 DOI: 10.1002/mdc3.14281
Andrew P Hunt, Aline Souza Pagnussat, Alexander Lehn, Daniel Moore, Daniel Schweitzer, E-Liisa Laakso, Ewald Hennig, Meg E Morris, Graham Kerr, Ian Stewart

Background: People living with Parkinson's disease (PD) commonly experience heat sensitivity-worsening symptoms and restricted daily activities in heat.

Objective: This study aimed to develop a scale of heat sensitivity for people with PD.

Methods: Through a search of the scientific literature and online forums, we developed 41 items relating to experiences of heat for people with PD to assess heat sensitivity. A panel of experts was then consulted to review the scale items critically. After two rounds of review, the scale was refined to 36 items with an overall scale content validity index of 0.89. Via an online survey, 247 people with PD responded to the items.

Results: The items were examined with exploratory factor analysis to determine the underlying factors therein. After several iterations, a simple structure was achieved with 29 items loading uniquely onto one of four factors: daily activities, sweating and exercise, heat-related illness, and symptoms and medications. The model had acceptable to excellent fit statistics (root mean square error of approximation = 0.073 [90% confidence interval 0.067-0.081], root mean square of the residuals = 0.03, comparative fit index = 0.93, and Tucker-Lewis index = 0.91), and each factor showed high reliability (Cronbach's α ≥0.89). Factor and total scale scores were significantly higher among those reporting sensitivity to heat and poor health status.

Conclusion: This new heat sensitivity scale for people living with PD can enable health professionals and clients to assess the severity and impact of heat sensitivity.

背景:帕金森病(PD)患者通常会出现热敏感--在高温下症状加重、日常活动受限:本研究旨在为帕金森病患者制定一个热敏感量表:通过搜索科学文献和在线论坛,我们制定了 41 个与帕金森氏症患者热体验相关的项目来评估热敏感性。然后,我们咨询了一个专家小组,对量表项目进行了严格审查。经过两轮审核后,量表细化为 36 个项目,总体量表内容效度指数为 0.89。通过在线调查,247 名帕金森氏症患者对项目进行了回答:对项目进行了探索性因子分析,以确定其中的基本因子。经过多次反复,最终确定了一个简单的结构,29 个条目被分别载入以下四个因子中的一个:日常活动、出汗和运动、热相关疾病以及症状和药物。该模型的拟合统计量(近似均方根误差 = 0.073 [90% 置信区间为 0.067-0.081],残差均方根 = 0.03,比较拟合指数 = 0.93,塔克-刘易斯指数 = 0.91)可以接受,甚至非常好,而且每个因子都显示出很高的可靠性(克朗巴赫指数 α ≥0.89)。报告对热敏感和健康状况差的人的因子得分和总分明显更高:这一新的帕金森病患者热敏感量表可以帮助医疗专业人员和患者评估热敏感的严重程度和影响。
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引用次数: 0
Characterizing Hand Function in Parkinson's Disease Patients with a Self-Administered Electronic Manual Dexterity Test. 通过自制电子手动灵活性测试了解帕金森病患者手部功能的特点。
IF 2.6 4区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2024-11-27 DOI: 10.1002/mdc3.14286
A Elizabeth Jansen, Anson B Rosenfeldt, Cielita Lopez-Lennon, Hubert Fernandez, Eric Zimmerman, Peter B Imrey, Leland E Dibble, Jay L Alberts

Background: Dexterous dysfunction is a bothersome patient-reported symptom of Parkinson's disease (PD). Current clinical assessments do not directly evaluate goal-directed hand function. This project sought to determine the capability of the electronic Manual Dexterity Test (MDT) to characterize dexterity across a range of PD patients.

Objectives: To objectively quantify manual dexterity in individuals with PD using a self-administered manual dexterity test.

Methods: Two hundred and forty-nine PD patients completed trials of the MDT with each upper extremity (UE) both while ON and OFF antiparkinsonian medication. Differences in MDT by medication state, more vs less affected UE, and Hoehn and Yahr (H&Y) stage were evaluated using linear mixed models. The relationships of trial duration to MDS-UPDRS II patient quality of life (QoL) questions for eating, dressing and hygiene were also evaluated.

Results: MDT duration was significantly shorter ON medication (26.3 seconds) compared to OFF medication (27.2 seconds) (P < 0.001). Similarly, MDT duration was significantly shorter for less (25.8 seconds) compared to more (27.6 seconds) affected limb (P < 0.001). Trial durations increased with H&Y stage (P < 0.001 for trend). MDT performance was related to MDS-UPDRS II questions for eating, dressing, and hygiene performance (P < 0.001).

Conclusions: The MDT provides an objective and quantitative assessment of dexterity. The time to complete the MDT was sensitive to changes in medication state, more and less affected UE, disease severity, and important activities of daily living. The MDT has potential for utilization in precise tracking of manual dexterity over the course of PD.

背景:灵巧功能障碍是帕金森病(PD)患者报告的一种令人烦恼的症状。目前的临床评估并不能直接评估目标导向的手部功能。本项目旨在确定电子手部灵活性测试(MDT)在描述一系列帕金森病患者手部灵活性方面的能力:使用自制的手部灵活性测试客观量化帕金森病患者的手部灵活性:249 名帕金森病患者在服用和停用抗帕金森药物期间分别完成了上肢(UE)的 MDT 试验。使用线性混合模型评估了不同用药状态、受影响较多与较少的上肢和Hoehn与Yahr(H&Y)分期在MDT上的差异。此外,还评估了试验持续时间与 MDS-UPDRS II 患者饮食、穿衣和卫生生活质量(QoL)问题之间的关系:结果:用药时(26.3 秒)与停药时(27.2 秒)相比,MDT 持续时间明显缩短(P 结论:MDT 提供了一种客观、量化的患者生活质量评估方法:MDT 可对患者的灵活性进行客观、定量的评估。完成 MDT 的时间对用药状态的变化、UE 受影响的程度、疾病的严重程度以及重要的日常生活活动都很敏感。MDT 有潜力用于精确追踪帕金森病病程中的手部灵活性。
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引用次数: 0
MR-Guided Focused Ultrasound for the Treatment of Tremor in Fragile X-Associated Tremor/Ataxia Syndrome. 磁共振引导聚焦超声治疗脆性 X 相关震颤/共济失调综合征的震颤。
IF 2.6 4区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2024-11-21 DOI: 10.1002/mdc3.14270
Jesús García-de Soto, Jessica María Pouso-Diz, Gustavo Fernández-Pajarín, Paula Román-Pena, Amanda Álvarez-Noval, Miguel Blanco-Ulla, Eduardo Arán-Echabe, Begoña Ares, Ángel Sesar
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引用次数: 0
Association of Hemispheric Asymmetry of Dopamine-Transporter Binding with Risk of Parkinsonian Depression. 多巴胺-转运体结合的半球不对称与帕金森抑郁症风险的关系
IF 2.6 4区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2024-11-20 DOI: 10.1002/mdc3.14276
Emilio Fernández-Espejo, Fernando Rodríguez de Fonseca

Background: Depression is the most common psychiatric disorder diagnosed in patients with Parkinson's disease (PD). A direct role in PD depression for loss of dopaminergic terminals and dopamine-transporter (DAT) expression in the striatum is revealed by many studies.

Objectives: The objective was to discern the relationship between DAT neuroimaging and risk of depression in PD.

Methods: One hundred and ninety-eight PD patients (101 with depression, 97 without depression) were evaluated using an extensive protocol from 2015 to 2023. DAT availability at striatal terminals was assessed with single-photon emission computed tomography with 123I-Ioflupane. Specific binding ratio (SBR) of 123I-Ioflupane and the whole striatum asymmetry index (SASI) were calculated. Data were analyzed with univariate/multivariate models as well as receiver operating characteristic (ROC) curves.

Results: A logistic regression model adjusting for confounding risk factors of depression indicates that SASI and PD duration are associated with the odds of having parkinsonian depression. SASI is the strongest predictor of risk of parkinsonian depression. Following ROC analysis, SASI is found to be an accurate factor for detecting parkinsonian depression because a cutoff value of 3.4895 of SASI shows good accuracy (0.813), sensitivity (81.1%), and specificity (80%). Higher SASI is also linked to more disease-related limitations in activities of daily living.

Conclusion: The whole SASI is the strongest predictor of risk of parkinsonian depression. The findings could be valuable in evaluating depression in PD patients.

背景:抑郁症是帕金森病(PD)患者中最常见的精神疾病。许多研究表明,纹状体中多巴胺能末梢和多巴胺转运体(DAT)表达的丧失在帕金森病抑郁症中起着直接作用:目的:研究DAT神经影像与帕金森病抑郁风险之间的关系:从2015年到2023年,采用广泛的方案对198名帕金森病患者(101名抑郁症患者,97名非抑郁症患者)进行了评估。用123I-Ioflupane单光子发射计算机断层扫描评估纹状体终端的DAT可用性。计算了 123I-Ioflupane 的特异性结合率 (SBR) 和整个纹状体不对称指数 (SASI)。数据采用单变量/多变量模型以及接收器操作特征曲线(ROC)进行分析:结果:调整了抑郁症混杂风险因素的逻辑回归模型表明,SASI和帕金森病持续时间与帕金森抑郁症的患病几率有关。SASI 是帕金森抑郁症风险的最强预测因子。根据 ROC 分析,SASI 是检测帕金森抑郁症的准确因素,因为 SASI 的临界值 3.4895 显示出良好的准确性(0.813)、敏感性(81.1%)和特异性(80%)。较高的 SASI 也与日常生活活动中更多与疾病相关的限制有关:结论:整体 SASI 是帕金森抑郁风险的最强预测指标。结论:整体 SASI 是预测帕金森抑郁风险的最有力指标,其研究结果对评估帕金森病患者的抑郁情况很有价值。
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引用次数: 0
Patient Perspectives on Upper-Limb Daily Function in Parkinson's Disease. 帕金森病患者对上肢日常功能的看法。
IF 2.6 4区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2024-11-19 DOI: 10.1002/mdc3.14277
Noa Cohen, Rachel Kizony

Background: Dexterity impairments are common among people with Parkinson's disease (PWP), yet little is understood about the effect of upper-limb (UL) dysfunction on daily activity performance.

Objectives: The aims were to (1) map the dexterity activities most affected and meaningful to PWP; (2) explore the associations between perceived dexterity function and disease severity, cognitive and motor UL impairments, dexterity ability, self-reported activities of daily living (ADL) function, and quality of life (QOL); (3) investigate variables explaining perceived dexterity function; and (4) examine the differences in perceived dexterity function based on dominance affectedness.

Methods: A total of 43 PWP (mean age = 70.00 years, standard deviation [SD] = 6.75) were assessed for perceived dexterity function (36-item Dexterity Questionnaire [DextQ-36]), dexterity ability (Coin Rotation Task), disease severity (modified Hoen and Yahr Scale), self-reported ADL function and motor UL impairments (Movement Disorder Society-Unified Parkinson's Disease Rating Scale), cognition (Montreal Cognitive Assessment), and QOL (Parkinson's Disease Questionnaire-39).

Results: The leading dexterity activities participants reported as difficult and meaningful included using a touchscreen, pulling on socks, and dialing a phone. Perceived dexterity significantly correlated with self-reported ADL function (r = 0.716), QOL (r = 0.691), disease severity (r = 0.470), and dominant-hand dexterity (r = 0.432). Dexterity ability and disease severity explained 30% of perceived dexterity variance. No differences in perceived dexterity function based on dominance affectedness were found.

Conclusions: PWP encounter challenges in complex dexterity tasks that impact their independence. Before interventions focused on UL function are initiated, assessments of PWP should include inquiries about the meaningfulness of challenging dexterity activities.

背景:帕金森病患者普遍存在灵活性障碍:帕金森病(PWP)患者普遍存在灵活性障碍,但人们对上肢(UL)功能障碍对日常活动表现的影响知之甚少:目的是:(1)绘制对帕金森病患者影响最大、最有意义的灵巧活动图;(2)探讨感知灵巧功能与疾病严重程度、认知和运动UL障碍、灵巧能力、自我报告的日常生活(ADL)功能和生活质量(QOL)之间的关联;(3)研究解释感知灵巧功能的变量;以及(4)根据优势受影响程度研究感知灵巧功能的差异:共有 43 名残疾人(平均年龄 = 70.00 岁,标准差 [SD] = 6.75岁)的感知灵巧功能(36项灵巧性问卷[DextQ-36])、灵巧能力(硬币旋转任务)、疾病严重程度(改良的Hoen和Yahr量表)、自我报告的ADL功能和运动UL损伤(运动障碍协会-统一帕金森病评分量表)、认知(蒙特利尔认知评估)和QOL(帕金森病问卷-39)进行了评估:参与者认为有难度和有意义的主要灵巧活动包括使用触摸屏、穿袜子和拨电话。感知灵巧性与自我报告的ADL功能(r = 0.716)、QOL(r = 0.691)、疾病严重程度(r = 0.470)和优势手灵巧性(r = 0.432)显著相关。灵巧能力和疾病严重程度解释了30%的感知灵巧性差异。结论:残疾人在复杂灵巧动作方面面临挑战:结论:残疾人在完成复杂的灵活性任务时会遇到困难,这影响了他们的独立性。在启动以 UL 功能为重点的干预措施之前,对残疾人的评估应包括询问具有挑战性的灵巧活动是否有意义。
{"title":"Patient Perspectives on Upper-Limb Daily Function in Parkinson's Disease.","authors":"Noa Cohen, Rachel Kizony","doi":"10.1002/mdc3.14277","DOIUrl":"https://doi.org/10.1002/mdc3.14277","url":null,"abstract":"<p><strong>Background: </strong>Dexterity impairments are common among people with Parkinson's disease (PWP), yet little is understood about the effect of upper-limb (UL) dysfunction on daily activity performance.</p><p><strong>Objectives: </strong>The aims were to (1) map the dexterity activities most affected and meaningful to PWP; (2) explore the associations between perceived dexterity function and disease severity, cognitive and motor UL impairments, dexterity ability, self-reported activities of daily living (ADL) function, and quality of life (QOL); (3) investigate variables explaining perceived dexterity function; and (4) examine the differences in perceived dexterity function based on dominance affectedness.</p><p><strong>Methods: </strong>A total of 43 PWP (mean age = 70.00 years, standard deviation [SD] = 6.75) were assessed for perceived dexterity function (36-item Dexterity Questionnaire [DextQ-36]), dexterity ability (Coin Rotation Task), disease severity (modified Hoen and Yahr Scale), self-reported ADL function and motor UL impairments (Movement Disorder Society-Unified Parkinson's Disease Rating Scale), cognition (Montreal Cognitive Assessment), and QOL (Parkinson's Disease Questionnaire-39).</p><p><strong>Results: </strong>The leading dexterity activities participants reported as difficult and meaningful included using a touchscreen, pulling on socks, and dialing a phone. Perceived dexterity significantly correlated with self-reported ADL function (r = 0.716), QOL (r = 0.691), disease severity (r = 0.470), and dominant-hand dexterity (r = 0.432). Dexterity ability and disease severity explained 30% of perceived dexterity variance. No differences in perceived dexterity function based on dominance affectedness were found.</p><p><strong>Conclusions: </strong>PWP encounter challenges in complex dexterity tasks that impact their independence. Before interventions focused on UL function are initiated, assessments of PWP should include inquiries about the meaningfulness of challenging dexterity activities.</p>","PeriodicalId":19029,"journal":{"name":"Movement Disorders Clinical Practice","volume":" ","pages":""},"PeriodicalIF":2.6,"publicationDate":"2024-11-19","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142676199","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Combined Habit Reversal Therapy and Acceptance and Commitment Therapy for Treatment of Tics in Tourette Syndrome: A Pilot Study of Effectiveness and Response Duration. 联合习惯逆转疗法和接纳与承诺疗法治疗妥瑞症抽搐症:关于疗效和反应持续时间的试点研究。
IF 2.6 4区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2024-11-18 DOI: 10.1002/mdc3.14260
Jennifer Eisenhauer, Alison Buckland, Stuart Watson, Rick Stell

Background: Few studies have examined the effectiveness and duration of mindfulness-based therapies for tics in Tourette's syndrome. This study combined habit reversal therapy (HRT) with acceptance and commitment therapy (ACT).

Objectives: To evaluate the efficacy and response duration of HRT + ACT in reducing tic severity in adults with Tourette's Syndrome.

Methods: Tic severity was assessed at baseline, post-intervention, and at 6- and 12-month follow-ups using the Yale Global Tic Severity Scale (YGTSS) and video assessments. The intervention included eight weekly 1-h sessions.

Results: Mixed-effects regression showed significant reductions in tic severity post-treatment (b = -10.36, P = 0.002), maintained at 6 months (b = -8.19, P = 0.012) and 12 months (b = -8.82, P = 0.009). Video assessments confirmed these findings.

Conclusion: The HRT + ACT protocol effectively reduced tic severity, with benefits lasting 12 months. These results support further trials to compare HRT + ACT with HRT alone.

背景:很少有研究对基于正念的疗法治疗抽动秽语综合征的有效性和持续时间进行研究。本研究将习惯逆转疗法(HRT)与接受和承诺疗法(ACT)相结合:评估习惯逆转疗法+接纳与承诺疗法在降低成人妥瑞症患者抽搐严重程度方面的疗效和反应持续时间:方法: 在基线、干预后、6 个月和 12 个月的随访中,使用耶鲁全球抽搐严重程度量表(YGTSS)和视频评估对抽搐严重程度进行评估。干预包括每周八次、每次 1 小时的疗程:混合效应回归显示,治疗后抽搐严重程度明显降低(b = -10.36,P = 0.002),并在 6 个月(b = -8.19,P = 0.012)和 12 个月(b = -8.82,P = 0.009)时保持不变。视频评估证实了这些结果:HRT+ACT方案有效降低了抽搐的严重程度,其疗效可持续12个月。这些结果支持进一步进行试验,比较 HRT + ACT 与单独使用 HRT 的效果。
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引用次数: 0
Progression of Dopaminergic Therapy Changes in Parkinson's Disease in Asian and Native Hawaiian and Pacific Islander Populations. 多巴胺能疗法在亚裔、夏威夷原住民和太平洋岛民帕金森病中的进展变化。
IF 2.6 4区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2024-11-18 DOI: 10.1002/mdc3.14280
Kirra Borrello, Shay Nakahira, Paul Fontana, Darrel Guittu, Chanel Hunter, Anson Lee, Julia Jahansooz, Edward Weldon, Meliza Roman, Hyeong Jun Ahn, Enrique Carrazana, Kore Liow
{"title":"Progression of Dopaminergic Therapy Changes in Parkinson's Disease in Asian and Native Hawaiian and Pacific Islander Populations.","authors":"Kirra Borrello, Shay Nakahira, Paul Fontana, Darrel Guittu, Chanel Hunter, Anson Lee, Julia Jahansooz, Edward Weldon, Meliza Roman, Hyeong Jun Ahn, Enrique Carrazana, Kore Liow","doi":"10.1002/mdc3.14280","DOIUrl":"https://doi.org/10.1002/mdc3.14280","url":null,"abstract":"","PeriodicalId":19029,"journal":{"name":"Movement Disorders Clinical Practice","volume":" ","pages":""},"PeriodicalIF":2.6,"publicationDate":"2024-11-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142648469","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
Can We Better Predict the Timing for Medication Initiation in Early PD? 我们能否更好地预测早期帕金森病的用药时机?
IF 2.6 4区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2024-11-18 DOI: 10.1002/mdc3.14279
Carlo Colosimo, Luca Marsili
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引用次数: 0
Preferences regarding Disclosure of Risk for Parkinson's Disease in a Population-based Study. 一项基于人口的研究中有关帕金森病风险披露的偏好。
IF 2.6 4区 医学 Q2 CLINICAL NEUROLOGY Pub Date : 2024-11-18 DOI: 10.1002/mdc3.14264
Philipp Mahlknecht, Simon Leiter, Corinne Horlings, Katarína Schwarzová, Iris Egner, Heike Stockner, Kathrin Marini, Christoph Theyer, Laura Zamarian, Atbin Djamshidian, Klaus Seppi, Fernanda Farfan, Alicia Garrido, Soumyabrata Ghosh, Rejko Krüger, Deborah McIntyre, Brit Mollenhauer, Alastair Noyce, Claire Pauly, Daniel F Pilco-Janeta, Kavita Rege, Venkata P Satagopam, Sebastian Schade, Cristina Simonet, Claudia Trenkwalder, Werner Poewe

Background: Preferences for risk disclosure in population-based studies assessing Parkinson's disease (PD) risk have not been assessed so far.

Objectives: To examine preferences for risk disclosure in a subset of the European Healthy Brain Aging (HeBA) multicenter study.

Methods: After a remote PD risk assessment, a structured pilot-questionnaire on risk disclosure was first presented to participants (≥50 years, without neurodegenerative diseases) during in-person visits at the Innsbruck study site.

Results: From the included 81 participants (63% females, median age 65 years), 79% expressed an unconditional desire to be informed about their PD risk. Confronted with a hypothetical scenario of a positive, specific PD test, most would try to live a healthier lifestyle. Regarding future placebo-controlled disease-modification trials, 66% stated they would probably or definitely participate.

Conclusions: This pilot-study shows an open-minded view of participants towards disclosure of risk for future PD and a proactive attitude regarding dealing with one's risk.

背景:在以人群为基础的帕金森病(PD)风险评估研究中,迄今为止尚未对风险披露的偏好进行评估:在欧洲健康脑老龄化(HeBA)多中心研究的一个子集中考察风险披露的偏好:方法:在对脑退化症风险进行远程评估后,首先在因斯布鲁克研究基地对参与者(年龄≥50岁,无神经退行性疾病)进行面对面访问,向他们发放结构化的风险披露试点问卷:在81名参与者(63%为女性,中位年龄为65岁)中,79%的人表示无条件希望了解自己的帕金森病风险。面对假想的阳性、特定的帕金森病检测结果,大多数人都会尝试过更健康的生活方式。关于未来的安慰剂对照疾病调整试验,66%的人表示他们可能会或一定会参加:这项试点研究表明,参与者对披露未来帕金森病风险持开放态度,并对应对自身风险持积极态度。
{"title":"Preferences regarding Disclosure of Risk for Parkinson's Disease in a Population-based Study.","authors":"Philipp Mahlknecht, Simon Leiter, Corinne Horlings, Katarína Schwarzová, Iris Egner, Heike Stockner, Kathrin Marini, Christoph Theyer, Laura Zamarian, Atbin Djamshidian, Klaus Seppi, Fernanda Farfan, Alicia Garrido, Soumyabrata Ghosh, Rejko Krüger, Deborah McIntyre, Brit Mollenhauer, Alastair Noyce, Claire Pauly, Daniel F Pilco-Janeta, Kavita Rege, Venkata P Satagopam, Sebastian Schade, Cristina Simonet, Claudia Trenkwalder, Werner Poewe","doi":"10.1002/mdc3.14264","DOIUrl":"10.1002/mdc3.14264","url":null,"abstract":"<p><strong>Background: </strong>Preferences for risk disclosure in population-based studies assessing Parkinson's disease (PD) risk have not been assessed so far.</p><p><strong>Objectives: </strong>To examine preferences for risk disclosure in a subset of the European Healthy Brain Aging (HeBA) multicenter study.</p><p><strong>Methods: </strong>After a remote PD risk assessment, a structured pilot-questionnaire on risk disclosure was first presented to participants (≥50 years, without neurodegenerative diseases) during in-person visits at the Innsbruck study site.</p><p><strong>Results: </strong>From the included 81 participants (63% females, median age 65 years), 79% expressed an unconditional desire to be informed about their PD risk. Confronted with a hypothetical scenario of a positive, specific PD test, most would try to live a healthier lifestyle. Regarding future placebo-controlled disease-modification trials, 66% stated they would probably or definitely participate.</p><p><strong>Conclusions: </strong>This pilot-study shows an open-minded view of participants towards disclosure of risk for future PD and a proactive attitude regarding dealing with one's risk.</p>","PeriodicalId":19029,"journal":{"name":"Movement Disorders Clinical Practice","volume":" ","pages":""},"PeriodicalIF":2.6,"publicationDate":"2024-11-18","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"142668418","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":4,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":"","EPubDate":null,"PubModel":null,"JCR":null,"JCRName":null,"Score":null,"Total":0}
引用次数: 0
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Movement Disorders Clinical Practice
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