Journal of Parkinson's disease最新文献

ObjectiveParkinson's disease (PD) frequently involves dysphagia, yet real-world longitudinal data capturing its progression and response to clinical care remain limited. Most prior studies exclude treated patients or rely solely on subjective or cross-sectional data. This study investigates long-term changes in swallowing physiology and diet in a pragmatic, treated PD population.MethodsWe retrospectively reviewed patients with PD who underwent at least two videofluoroscopic swallow studies (VFSS) ≥ 1 year apart at a tertiary laryngology center. Individuals with comorbid neurologic or structural disease were excluded. Standardized metrics included the Dynamic Imaging Grade of Swallowing Toxicity (DIGEST), Penetration Aspiration Scale (PAS), Functional Oral Intake Scale (FOIS), and International Dysphagia Diet Standardization Initiative (IDDSI), with kinematic analysis of Pharyngeal Constriction Ratio (PCR) and Maximum Pharyngoesophageal Segment Opening (PESmax). Ordinal outcomes were compared using Wilcoxon signed-rank tests; kinematic changes were analyzed with paired t-tests.ResultsNineteen patients (mean age 79.4 years, 73% male) completed 38 VFSS over a mean 2.6-year interval. Despite an average of 9.7 swallow therapy sessions per patient, significant declines were observed in PESmax (p < 0.001), DIGEST Overall (p = 0.024), Efficiency (p = 0.039), and IDDSI solids (p = 0.041). Subgroup analysis of mild-to-moderate PD (H&Y 1-3) showed similar trends.ConclusionSwallowing function deteriorates over time in PD, even with treatment. This study highlights the value of instrumental reassessment and supports proactive, longitudinal management in real-world care settings.

IntroductionExercise can improve outcomes for people with Parkinson's. Telerehabilitation (TR) may lower costs and maximise clinician time but its efficacy for gait and balance in early Parkinson's is uncertain. We conducted a randomized controlled feasibility trial of individualised real-time physiotherapy delivered via videoconference.MethodsWe recruited people with early (<4 years' duration) Parkinson's from 2 English NHS hospitals. The TR group had 1 × 60 min, 4 × 30 min video calls and 2 × 10 min calls. These calls occurred within 12 weeks of randomization. Experienced physiotherapists prescribed individualized exercises. The usual care group received standard exercise advice from their physician. Physical activity was measured using Fitbit Inspire. A qualitative process evaluation was undertaken.Results84 people were screened, 64 were eligible and 40 recruited. 21 and 19 were randomized to TR and usual care respectively. 90% of study instruments were completed per protocol.Median [interquartile range; IQR] change in Unified Parkinson's Disease Rating Scale (UPDRS) at six months was -3.5 [-8 to 2.5] for the TR group and 7 [0 to 17] for usual care, effect size (Cohen's D = -0.537). Median [IQR] change in weekly step count was 4215 [-8769 to 19664] for the TR group versus -2185 [-10764 to 3143] for usual care (Cohen's D = 0.198). Participants found the intervention acceptable. Most participants were confident in using the videoconference systems.ConclusionA definitive trial of TR for early Parkinson's is feasible. UPDRS and step count are suitable outcomes.

BackgroundThe decision to undergo deep brain stimulation (DBS) surgery for patients with Parkinson's disease (PD) is often challenging and complex. Decisional outcomes may be improved by using decisional support tools that foster shared decision making.ObjectiveThe objective of this study was to develop a decision aid for PD patients considering DBS surgery and evaluate its acceptability.MethodsThe decision aid was developed using an evidence-based and systematic approach. The steps in development included a needs assessment, literature review, development of a decision aid prototype, and testing of the prototype with surveys for acceptability in a clinic setting.ResultsA total of 136 participants with PD participated in this study. The needs assessment included 57 participants who completed the decisional conflict scale with a mean score of 35.3, indicating high decisional conflict. After development, initial testing of the decision aid was completed by 22 participants (16 on paper version and 6 on interactive website version). Subsequently, 46 PD participants evaluated the decision aid for acceptability. Eighty seven percent of participants agreed or strongly agreed that they were satisfied with the quality of the decision aid. Most participants found the language, amount of information, length, balance, and risk and benefits section acceptable.ConclusionWe determined that PD patients undergoing DBS evaluation experience high decisional conflict. We subsequently created a DBS decision aid to increase knowledge, manage expectations, clarify values, and facilitate shared decision making. The decision aid was acceptable to PD patients with and without DBS.

BackgroundHandwriting changes are recognised as an early manifestation of Parkinson's disease. Whilst isolated rapid eye movement sleep behaviour disorder (iRBD) is strongly associated with future Parkinson's diagnosis, changes in handwriting remain under-explored.ObjectiveTo assess the handwriting of people with iRBD and develop a rating scale for detection of early disease clinical hallmarks.MethodsCross-sectional study involving 33 people with polysomnography-confirmed iRBD and 29 controls. Participants copied a standard sentence using pen and paper. A graphologist analysed each script blindly and designed a scale based on observed abnormal patterns which included: micrographia, sentence slope, hidden tremor, retracing, resting marks, irregular shape, excessive pen pressure, and inconsistent word spacing. Each item was scored 0/1 based on their absence/presence. Separately, three blinded movement disorders experts assessed the scripts based on their global clinical impression as well as using the rating scale.ResultsPeople with iRBD were slower to complete the task than controls (76.70 s (SD = 30.39) vs 61 s (SD = 10.71); p = 0.004). Hidden tremor was the most common feature amongst the iRBD group (72.0% vs 34.5%; p = 0.005), followed by sentence slope (60% vs 24% p = 0.005) and pen pressure (48% vs 14%; p = 0.006). Micrographia was observed in both groups (iRBD 45.4%, controls 41.4% p = 0.801). Classification accuracy of the scale for iRBD was higher than expert global assessment (AUC 0.76 vs AUC 0.62; p = 0.029).ConclusionsWriting speed, tremor, pen pressure and sentence slope are handwriting features that warrant further investigation to define early patterns in people with iRBD.

The traditional approach of using double-blind, placebo controlled, parallel group trial designs has confirmed the efficacy of a large number of agents in relieving the symptoms of Parkinson's disease (PD) but has not, to date, led to the discovery of any disease-modifying treatments for PD. There are multiple potential reasons underlying the failure to find disease modifying approaches, which may in part relate to; inadequate understanding of PD pathophysiology and therefore inappropriate target selection; the possibility that even good candidate drugs may simply fail to reach and to ultimately engage with their putative targets at the required dose; and the significant heterogeneity of the disease both in terms of its pathophysiology and its motor and non-motor symptoms. PD also has some additional challenges that may be addressed by careful consideration of trial design. This includes; its generally slow rate of disease progression necessitating long follow-up times to identify evidence of disease slowing; lack of understanding regarding the optimal stage of disease that might be most amenable to intervention; as well as lack of consensus regarding which outcome measures best capture patient relevant disease progression, and which biomarkers might consistently and objectively provide the earliest indication of disease progression. In this review we will discuss these issues and potential approaches that may help in the evolution of clinical trial design and thus ultimately provide a pathway to increase the likelihood of successful identification of disease-modifying treatments for Parkinson's disease.

Parkinson's disease is the fastest growing neurodegenerative disorder worldwide, yet care delivery remains fragmented and inequitable. We propose a new construct called the Parkinson's Universe. It is a person-centered model that reimagines care as a coordinated universe. This commentary summarizes the model's elements including the patient as the sun or center of the universe, the caregiver as Mercury, the social support and multidisciplinary healthcare professionals as the other planets, mission control as care coordination, stigma as Pluto, barriers as asteroids, supportive technology as satellites, and support networks as stars. We discuss clinical and policy implications, emphasizing the urgent need to move beyond the fragmented gatekeeper system to one that is proactive, equitable, and holistic. As such, the Parkinson's Universe provides a blueprint for integrating innovation, advocacy, and multidisciplinary care. The model also has relevance across other complex chronic diseases.

Background: Parkinson's disease (PD) is a slowly progressing neurodegenerative disorder, so it is likely that people with PD (PwPD) face increasing disability. PwPD thus experience various degrees of fear of progression (FoP), which can become dysfunctional. Objective: This study aims to examine the prevalence of and contributing factors to dysfunctional FoP in PwPD. Methods: The Fear of Progression Questionnaire-Short Form (FoP-Q-SF) was administered along with further questionnaires for non-motor symptoms; PD motor symptoms as reported by the Unified Parkinson's Disease Rating Scale Part III (UPDRS III) were obtained from patient charts. Results: 28% of the 105 PwPD (mean age 66 years, 56% Hoehn & Yahr stage I/II) were categorized as experiencing dysfunctional levels of FoP using the established cut-off score of ≥34. Our analyses revealed that the FoP-Q-SF underestimates the prevalence of dysfunctional FoP in older and non-working PwPD. Using a more appropriate cut-off, 33% of PwPD are classified as having dysfunctional levels of FoP. We found strong correlations of FoP with measures of anxiety, depression and quality of life. Disease duration was secondary to these factors. We found no associations between FoP and motor symptoms. Conclusions: Our findings confirm that dysfunctional FoP significantly impacts the psychological well-being of PwPD, affecting one in three PwPD and contributing to heightened anxiety, depression, and reduced quality of life. Future validation studies are needed to confirm the cut-off value proposed here and to enable a better integration of the concept of FoP into routine care for PwPD.

BackgroundA key challenge in trials targeting disease modification in Parkinson's disease (PD) is the lack of sensitive, precise, and patient-relevant outcome measures. Digital mobility outcomes (DMOs), captured using body-worn devices, offer a novel, objective means to assess real-world gait and mobility-domains often impaired early in PD. The Mobilise-D consortium was established to develop and validate DMOs in PD and other conditions.ObjectiveTo describe DMOs in a large, representative international cohort of individuals with PD and compare to controls and across disease stage; and to determine compliance and feasibility.MethodsAs part of the Mobilise-D Clinical Validation and Extension Studies, real-world mobility of individuals with PD (n = 601) and matched controls (n = 232) was assessed using a single wearable device for seven days. Data were processed to yield 24 technically validated DMOs, representing different domains of real-world walking and mobility performance.ResultsDMO data were available for 531 PD and 221 controls. Significant differences between the groups were observed in 20 of 24 DMOs. Compared to controls, PD participants exhibited shorter daily walking duration and lower step counts, walking at a higher cadence and in fewer walking bouts per day. Findings also varied by disease severity, with differences observed particularly between controls vs. mild (Hoehn and Yahr stage I-II) and mild vs. moderate (Hoehn and Yahr stage III) disease. Compliance rates were high.ConclusionsDistinct DMO patterns across PD severity and between PD and controls support their utility as sensitive, scalable outcome measures for future clinical trials and therapeutic development.