Journal of Parkinson's disease最新文献

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Recent advances of transcranial electrical stimulation in healthy aging and Parkinson's disease: Effects on dual tasking. 经颅电刺激在健康衰老和帕金森病中的最新进展:对双重任务的影响。
IF 4 3区 医学
Journal of Parkinson's disease Pub Date : 2025-04-17 DOI: 10.1177/1877718X251327758
Martina Putzolu, Alessandro Botta, Carola Cosentino, Susanna Mezzarobba, Gaia Bonassi, Elisa Ravizzotti, Sara Terranova, Giovanna Lagravinese, Elisa Pelosin, Laura Avanzino
{"title":"Recent advances of transcranial electrical stimulation in healthy aging and Parkinson's disease: Effects on dual tasking.","authors":"Martina Putzolu, Alessandro Botta, Carola Cosentino, Susanna Mezzarobba, Gaia Bonassi, Elisa Ravizzotti, Sara Terranova, Giovanna Lagravinese, Elisa Pelosin, Laura Avanzino","doi":"10.1177/1877718X251327758","DOIUrl":"https://doi.org/10.1177/1877718X251327758","url":null,"abstract":"<p><p>Dual tasking involves the simultaneous execution of two actions. In the context of healthy aging and neurodegenerative disorders, such as Parkinson's disease (PD) engagement in dual tasking frequently results in impaired gait or upper limb performance, thereby affecting functional independence. Transcranial electrical stimulation is a non-invasive technique able to modulate brain activity, which might represent a potential tool for reducing dual task interference. The goal of this review is to provide a comprehensive summary of the most recent findings about the use of transcranial electrical stimulation in improving dual tasking in the elderly and people with PD, including considerations about the optimal stimulation parameters. Differences in terms of stimulation protocols emerged across the included studies. Among transcranial electrical stimulation techniques, transcranial direct current stimulation (tDCS) was the most frequently employed. Currently, using tDCS to target dorsolateral prefrontal cortex either alone or in a multi-site fashion, along with a concurrent complex task, appears to be the most promising method for reducing dual task interference. Nevertheless, the lack of control over interindividual variability, the heterogeneity in outcome measures assessing dual tasking, and the variations in protocol elements like the frequency and the number of sessions prevented us from drawing definitive conclusions about the best paradigm.</p>","PeriodicalId":16660,"journal":{"name":"Journal of Parkinson's disease","volume":" ","pages":"1877718X251327758"},"PeriodicalIF":4.0,"publicationDate":"2025-04-17","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144019645","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
Advice to people with Parkinson's in my clinic: Get a cardiopulmonary exercise test. 给我诊所帕金森患者的建议是:做一个心肺运动测试。
IF 4 3区 医学
Journal of Parkinson's disease Pub Date : 2025-04-13 DOI: 10.1177/1877718X251330814
Garett J Griffith, Kathleen E McKee, Guillaume Lamotte, Nijee S Luthra, Daniel M Corcos
{"title":"Advice to people with Parkinson's in my clinic: Get a cardiopulmonary exercise test.","authors":"Garett J Griffith, Kathleen E McKee, Guillaume Lamotte, Nijee S Luthra, Daniel M Corcos","doi":"10.1177/1877718X251330814","DOIUrl":"https://doi.org/10.1177/1877718X251330814","url":null,"abstract":"<p><p>Aerobic (cardiopulmonary) exercise training improves fitness and limits the progression of motor signs in Parkinson's disease. Individualized development of exercise prescriptions relies upon accurately measured peak heart rate (HR). Cardiopulmonary exercise testing (CPET) is the only methodology to objectively confirm an individual's peak HR. This test is important in individuals who may have autonomic dysfunction, which may manifest as chronotropic incompetence. Without CPET's confirmation of maximal effort, there is no way of knowing whether exercise prescription in those with chronotropic incompetence is accurate. CPET also provides information regarding cardiorespiratory fitness, which can motivate patients to exercise to prolong health.</p>","PeriodicalId":16660,"journal":{"name":"Journal of Parkinson's disease","volume":" ","pages":"1877718X251330814"},"PeriodicalIF":4.0,"publicationDate":"2025-04-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144003127","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
Exploring stigma in people living with Parkinson's disease and their caregivers: A review of qualitative studies. 探索帕金森病患者及其照护者的耻辱感:定性研究综述
IF 4 3区 医学
Journal of Parkinson's disease Pub Date : 2025-04-13 DOI: 10.1177/1877718X251330995
Dia Soilemezi, Antonia Siquier, Pilar Andrés
{"title":"Exploring stigma in people living with Parkinson's disease and their caregivers: A review of qualitative studies.","authors":"Dia Soilemezi, Antonia Siquier, Pilar Andrés","doi":"10.1177/1877718X251330995","DOIUrl":"https://doi.org/10.1177/1877718X251330995","url":null,"abstract":"<p><p><b>Background:</b> Stigma deeply affects individuals living with Parkinson's disease (PD), increasing the challenges of this frequent progressive neurodegenerative disorder. <b>Objective:</b> This systematic review synthesized qualitative studies to explore how stigma is experienced by people living with PD and their caregivers. <b>Methods:</b> A systematic search from four databases identified international qualitative literature on different dimensions and impact of stigma in PD. <b>Results:</b> Following abstracts and full papers screening, 22 studies published between 2004 and 2024 were included. Using thematic synthesis approach, the review revealed three primary themes: (1) living with self-stigma, characterized by feelings of vulnerability, shame and efforts to conceal symptoms, (2) living with public stigma, marked by societal exclusion, misconceptions, and stereotyping, particularly regarding visible symptoms and age, and (3) living with structural stigma, involving discrimination in workplaces and inadequate institutional support. <b>Conclusions:</b> These findings provide a comprehensive understanding of stigma's multifaceted impact, offering insights to design effective strategies that foster awareness, challenge misconceptions, and create a more supportive and inclusive environments for individuals living with PD.</p>","PeriodicalId":16660,"journal":{"name":"Journal of Parkinson's disease","volume":" ","pages":"1877718X251330995"},"PeriodicalIF":4.0,"publicationDate":"2025-04-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143987674","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
Association of cholesterol and glycemic state biomarkers with phenotypic variation and Parkinson's disease progression: The Oxford Discovery cohort. 胆固醇和血糖状态生物标志物与表型变异和帕金森病进展的关联:牛津发现队列
IF 4 3区 医学
Journal of Parkinson's disease Pub Date : 2025-04-13 DOI: 10.1177/1877718X251323914
Nicholas Kwan Ho Chiu, Michael Lawton, Tanja Zerenner, Alireza Morovat, Jessica Welch, Jamil Razzaque, Michele T Hu, Yoav Ben-Shlomo
{"title":"Association of cholesterol and glycemic state biomarkers with phenotypic variation and Parkinson's disease progression: The Oxford Discovery cohort.","authors":"Nicholas Kwan Ho Chiu, Michael Lawton, Tanja Zerenner, Alireza Morovat, Jessica Welch, Jamil Razzaque, Michele T Hu, Yoav Ben-Shlomo","doi":"10.1177/1877718X251323914","DOIUrl":"https://doi.org/10.1177/1877718X251323914","url":null,"abstract":"<p><p>BackgroundParkinson's disease (PD) has marked phenotypic variability. Increased lipids have been suggested as being neuroprotective whilst hyperglycemia may increase α-synuclein aggregation.ObjectiveWe have tested whether high total cholesterol and high-density lipoprotein cholesterol (HDL-C) and low levels of fructosamine are associated with better PD phenotypes and predict less rapid progressionMethodsNon-fasting serum HDL-C, total cholesterol, and fructosamine were measured at baseline in 866 patients with early PD (median duration, 0.96; IQR, 0.43-1.98 years) from the Oxford Discovery cohort. These biomarkers were compared against our data-derived PD subtypes using multinomial logistic regression. We used multilevel models to predict longitudinal motor and non-motor outcomes (e.g., cognition, mood).ResultsHDL-C and total cholesterol differed across baseline PD phenotype clusters, with reduced levels associated with the most severe motor and non-motor phenotypes (psychological well-being, cognitive impairment, REM sleep behavior disorder, and daytime sleepiness). Higher HDL-C and total cholesterol, although the latter was attenuated after adjustment for statin use, were associated with better baseline activities of daily living (e.g., UPDRS-II score with 1 SD increase in HDL-C -0.74, 95%CI -1.22 to -0.26, p = 0.002) and non-motor features. Neither predicted the rate of motor or non-motor progression. Fructosamine levels were not associated with phenotypic variability or rate of disease progression.ConclusionsHypercholesterolemia was associated with a better motor/non-motor disease subtype and daily living impairment at presentation, but did not predict longitudinal change. Future research needs to determine if these associations are causally related or secondary to disease onset by examining prodromal subjects.</p>","PeriodicalId":16660,"journal":{"name":"Journal of Parkinson's disease","volume":" ","pages":"1877718X251323914"},"PeriodicalIF":4.0,"publicationDate":"2025-04-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144014983","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
Pregnancy and delivery in women with Parkinson's disease: A case series. 帕金森病妇女的妊娠和分娩:一个病例系列。
IF 4 3区 医学
Journal of Parkinson's disease Pub Date : 2025-04-13 DOI: 10.1177/1877718X251316161
Willanka M Kapelle, Annelien M Oosterbaan, Gaia Patane, Capucine Piat, Khaled E Ghoniem, Emanuele Camerucci, Pierpaolo Turcano, James H Bower, Rodolfo Savica
{"title":"Pregnancy and delivery in women with Parkinson's disease: A case series.","authors":"Willanka M Kapelle, Annelien M Oosterbaan, Gaia Patane, Capucine Piat, Khaled E Ghoniem, Emanuele Camerucci, Pierpaolo Turcano, James H Bower, Rodolfo Savica","doi":"10.1177/1877718X251316161","DOIUrl":"https://doi.org/10.1177/1877718X251316161","url":null,"abstract":"<p><p>BackgroundParkinson's disease (PD) is a progressive degenerative disease affecting people at any age; however, it is generally more prevalent in older age groups. Younger individuals, especially women, are facing significant challenges that pertain to pregnancy. Unfortunately, the available information is limited and supported mostly by anecdotical experience.ObjectiveTo gain insight into the interaction between early-onset PD and pregnancy.MethodsWe report on a case series of women, diagnosed with PD, that underwent pregnancy to explore the disease catachrestic, natural history, and different challenges associated with these unique group of people.ResultsWe identified a total of 9 participants who met our inclusion criteria, who had gone through a total of 12 pregnancies after onset of PD motor symptoms. In 10 out of 12 pregnancies, participants did not use any PD medication; throughout 1 pregnancy, a participant used pramipexole and throughout 1 pregnancy, a participant used levodopa/carbidopa.ConclusionsOur study supports the importance of further multicentric studies on pregnant women with PD to prospectively collect data on complications, birth outcomes, lactation, and PD severity.</p>","PeriodicalId":16660,"journal":{"name":"Journal of Parkinson's disease","volume":" ","pages":"1877718X251316161"},"PeriodicalIF":4.0,"publicationDate":"2025-04-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"144004756","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
Conservative iron chelation for VAC14: Two-year clinical-radiological follow-up. 保守铁螯合治疗VAC14:两年临床放射随访。
IF 4 3区 医学
Journal of Parkinson's disease Pub Date : 2025-04-13 DOI: 10.1177/1877718X251331820
Thomas Ollivier, David Devos, Gregory Kuchcinski, Luc Defebvre, Vincent Huin, Eugenie Mutez
{"title":"Conservative iron chelation for VAC14: Two-year clinical-radiological follow-up.","authors":"Thomas Ollivier, David Devos, Gregory Kuchcinski, Luc Defebvre, Vincent Huin, Eugenie Mutez","doi":"10.1177/1877718X251331820","DOIUrl":"https://doi.org/10.1177/1877718X251331820","url":null,"abstract":"<p><p>There is a distinct lack of consensus on the most effective treatments for neurodegeneration with brain iron accumulation. This is due to the rarity of the disease, its phenotypic variability, and the multiplicity of pathophysiological mechanisms. Our team has already proposed the use of conservative iron chelation in cases of neuroferritinopathy, with interesting results. However, no mention has yet been made of the treatment of parkinsonism-dystonia related to <i>VAC14</i> gene mutations. The case reported here illustrates clinical stability after 2 years of conservative iron chelation, with an improvement in radiological images.</p>","PeriodicalId":16660,"journal":{"name":"Journal of Parkinson's disease","volume":" ","pages":"1877718X251331820"},"PeriodicalIF":4.0,"publicationDate":"2025-04-13","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143998454","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
Parkinson's disease participant-led research on the impact of deep brain stimulation frequency. 帕金森病参与者主导的深部脑刺激频率影响研究。
IF 4 3区 医学
Journal of Parkinson's disease Pub Date : 2025-04-11 DOI: 10.1177/1877718X251331904
Mark D McAuley, John M Dean, Ethan Heming, Alena A Ionova, Celestina A Onabajo, Madison Solie, Sara A Stephenson, Susan E Boehnke
{"title":"Parkinson's disease participant-led research on the impact of deep brain stimulation frequency.","authors":"Mark D McAuley, John M Dean, Ethan Heming, Alena A Ionova, Celestina A Onabajo, Madison Solie, Sara A Stephenson, Susan E Boehnke","doi":"10.1177/1877718X251331904","DOIUrl":"https://doi.org/10.1177/1877718X251331904","url":null,"abstract":"<p><p>Parkinson's disease symptoms, including gait disturbances and speech impairment, substantially impact quality of life. This n-of-1 study examined the effects of deep brain stimulation (DBS) frequency on a 54-year-old man with Parkinson's disease. The participant conceived and led the study, embedding patient insight within the project design and execution. The impacts of three DBS frequencies were assessed using markerless motion capture for gait, voice recording for speech analysis, and Kinarm robotic tasks of upper limb coordination and cognitive assessment. The study found that DBS frequency has a clinically significant impact on multiple symptoms, including gait, rigidity, speech and cognitive-motor ability.</p>","PeriodicalId":16660,"journal":{"name":"Journal of Parkinson's disease","volume":" ","pages":"1877718X251331904"},"PeriodicalIF":4.0,"publicationDate":"2025-04-11","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143977411","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
Digital health technology for Parkinson's disease with comprehensive monitoring and artificial intelligence-enabled haptic biofeedback for bulbar dysfunction. 针对帕金森病的数字健康技术,可对球部功能障碍进行全面监测和人工智能触觉生物反馈。
IF 4 3区 医学
Journal of Parkinson's disease Pub Date : 2025-04-04 DOI: 10.1177/1877718X251329354
Shuai Xu, Cagla Kantarcigil, Rabab Rangwala, Abigail Nellis, Keum San Chun, Dylan Richards, Ignacio Albert-Smet, Matthew Keller, Hope Chen, Joy Huang, Shiv Patel, Albert Yang, Aejin Shon, Jacqueline Topping, Jessica Walter, Sarah Coughlin, Hyoyoung Jeong, Jong Yoon Lee, Bonnie Martin-Harris
{"title":"Digital health technology for Parkinson's disease with comprehensive monitoring and artificial intelligence-enabled haptic biofeedback for bulbar dysfunction.","authors":"Shuai Xu, Cagla Kantarcigil, Rabab Rangwala, Abigail Nellis, Keum San Chun, Dylan Richards, Ignacio Albert-Smet, Matthew Keller, Hope Chen, Joy Huang, Shiv Patel, Albert Yang, Aejin Shon, Jacqueline Topping, Jessica Walter, Sarah Coughlin, Hyoyoung Jeong, Jong Yoon Lee, Bonnie Martin-Harris","doi":"10.1177/1877718X251329354","DOIUrl":"https://doi.org/10.1177/1877718X251329354","url":null,"abstract":"<p><p>BackgroundParkinson's disease (PD) is the second most prevalent neurodegenerative disorder with broad manifestations of motor and non-motor symptoms. While significant progress has been made in assessing motor dysfunction through wearable sensors, less attention has been directed towards bulbar issues like swallowing difficulties.ObjectiveWe introduce a digital health solution leveraging advanced acousto-mechanic (ADAM) sensors capable of comprehensively evaluating motor and bulbar dysfunction in PD that additionally offers artificial intelligence-driven haptic biofeedback to enhance swallowing frequency.MethodsThe swallow detection algorithm developed with data from n = 58 healthy subjects yielded an F1 score of 0.89 for swallow event detection.ResultsIn a pilot study with PD patients (n = 20) experiencing mild (60%) or moderate (40%) dysphagia, the use of ADAM sensors with biofeedback significantly increased swallow frequency by 45%, from 0.77 to 1.10 swallows per minute (p < 0.0001). The sensors demonstrated high sensitivity (89%) and a strong correlation with visual observations by speech language pathologists (r = 0.92, p < 0.05), with 100% agreement on respiratory-swallow phase patterning. Feedback from patients and caregivers underscored the utility and comfort of the technology.ConclusionsThis tailored digital health solution not only monitors PD symptoms but also holds potential as an assistive device, marking a significant step in improving the quality of life for PD patients.</p>","PeriodicalId":16660,"journal":{"name":"Journal of Parkinson's disease","volume":" ","pages":"1877718X251329354"},"PeriodicalIF":4.0,"publicationDate":"2025-04-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143780357","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
Identification of a circRNA-miRNA-mRNA interactome associated with Parkinson's disease progression. 与帕金森病进展相关的circRNA-miRNA-mRNA相互作用组的鉴定
IF 4 3区 医学
Journal of Parkinson's disease Pub Date : 2025-04-04 DOI: 10.1177/1877718X251331930
Lisa Shrestha, André Leier
{"title":"Identification of a circRNA-miRNA-mRNA interactome associated with Parkinson's disease progression.","authors":"Lisa Shrestha, André Leier","doi":"10.1177/1877718X251331930","DOIUrl":"https://doi.org/10.1177/1877718X251331930","url":null,"abstract":"<p><p>BackgroundCircular RNAs (circRNAs) constitute a distinctive subclass of RNAs that are known for their regulatory roles in fundamental cellular processes. Due to their increased stability and ubiquitous expression, circular RNAs have been widely studied as potential molecular targets in various diseases, including neurodegenerative diseases. While several studies have found differentially expressed circRNAs associated with Parkinson's disease (PD), none has looked specifically into PD progression.ObjectiveTo elucidate the role of circRNAs in the progression of PD by identifying dysregulated circRNAs associated with PD progression and to pinpoint potential downstream miRNAs and associated differentially expressed gene targets.MethodsIn this study, we have utilized large-scale, longitudinal, and deep RNA-seq data from two independent cohorts, namely the Parkinson's Progression Marker Initiative (PPMI) and the Parkinson's Disease Biomarker Program (PDBP), to characterize circRNA expression in patients of early PD stage.ResultsWe identified six circRNAs significantly differentially expressed in whole blood samples obtained from PD patients over time. Additionally, we were able to map a competing endogenous RNA (ceRNA) network with potential downstream miRNA-mRNA targets and, with the help of co-expression analysis, to identify genes associated with PD progression. Our findings provide compelling evidence for a dysregulated circRNA interactome as an indicator of PD progression, with changes in the expression of these circRNAs and downstream gene targets being significantly associated with changes in UPDRS III scores in PD patients.ConclusionsOur results strongly indicate the association of circular RNAs with PD progression and emphasize its significance as a critical molecular marker.</p>","PeriodicalId":16660,"journal":{"name":"Journal of Parkinson's disease","volume":" ","pages":"1877718X251331930"},"PeriodicalIF":4.0,"publicationDate":"2025-04-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143780362","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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
Fears and uncertainties of people with Parkinson's disease. 帕金森氏症患者的恐惧和不确定性。
IF 4 3区 医学
Journal of Parkinson's disease Pub Date : 2025-04-03 DOI: 10.1177/1877718X251328565
Esme D Trahair, Darby Steiger, Nashay Lowe, Robyn Rapoport, Caitlin Kelliher, Stephanie Benvengo, Catherine Kopil, Lana M Chahine, Connie Marras, Sneha Mantri
{"title":"Fears and uncertainties of people with Parkinson's disease.","authors":"Esme D Trahair, Darby Steiger, Nashay Lowe, Robyn Rapoport, Caitlin Kelliher, Stephanie Benvengo, Catherine Kopil, Lana M Chahine, Connie Marras, Sneha Mantri","doi":"10.1177/1877718X251328565","DOIUrl":"https://doi.org/10.1177/1877718X251328565","url":null,"abstract":"<p><p>BackgroundThe patient experience of Parkinson's disease (PD) is heterogeneous, with limited prognostic tools to predict individual outcomes, leading to significant uncertainty for people with PD. Under-recognition of both psychosocial and biological drivers of fear and uncertainty in Parkinson's disease (PD) by clinicians may further contribute to patient distress.ObjectiveThe objective of the present study is to investigate fear and uncertainty in people with PD.MethodsIn-depth interviews were conducted with twenty people with PD (11 semi-structured, 9 guided/prompted). Thematic analysis organized the fears/uncertainties by topic as well as by contextual factors such as the timing of the fear (e.g., active or anticipatory; at the time of diagnosis or developed subsequent to diagnosis) and the lexicon used to describe it.ResultsParticipants expressed a wide range of fears and uncertainties about their future and quality of life with PD, which shifted with disease progression. Most fears were anticipatory rather than in response to current concerns. Participants reported substantial psychosocial influence from media personalities or family/friends with PD. Most participants reported that they had not disclosed their fears to their healthcare providers.ConclusionsClinicians caring for people with PD should be aware of a range of often-unspoken fears and uncertainties, which may carry a substantial psychosocial burden. Open acknowledgement and normalization by clinicians may help patients feel less isolated in their disease.</p>","PeriodicalId":16660,"journal":{"name":"Journal of Parkinson's disease","volume":" ","pages":"1877718X251328565"},"PeriodicalIF":4.0,"publicationDate":"2025-04-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":null,"resultStr":null,"platform":"Semanticscholar","paperid":"143780360","PeriodicalName":null,"FirstCategoryId":null,"ListUrlMain":null,"RegionNum":3,"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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