Neurological Movement Disorder Research Articles

Health-Related Quality of Life in Romanian Patients with Dystonia: An Exploratory Study.

Background/Objectives: Dystonia is a neurological movement disorder characterized by involuntary muscle contractions that lead to abnormal movements and postures; it has a major impact on patients' health-related quality of life (HRQoL). The aim of this study was to examine the HRQoL of Romanian patients with dystonia using the EQ-5D-5L instrument. Methods: Responses to the EQ-5D-5L and the visual analogue scale (VAS) were collected alongside demographic and clinical characteristics. Health profiles were analyzed via the metrics of the EQ-5D-5L, severity levels, and age groups. Using Shannon's indexes, we calculated informativity both for patients' health profile as a whole and each individual dimension. Level sum scores (LSS) of the EQ-5D-5L were calculated and compared with scores from the EQ-5D-5L index and VAS. The HRQoL measures were analyzed through demographic and clinical characteristics. Descriptive statistics, Spearman correlation, and non-parametric tests (Mann-Whitney U or Kruskall-Wallis H) were used. The level of agreement between HRQoL measures was assessed using their intraclass correlation coefficient (ICC) and Bland-Altman plots. Results: A sample of 90 patients was used, around 75.6% of whom were female patients, and the mean age at the beginning of the survey was 58.7 years. The proportion of patients reporting "no problems" in all five dimensions was 10%. The highest frequency reported was "no problems" in self-care (66%), followed by "no problems" in mobility (41%). Shannon index and Shannon evenness index values showed higher informativity for pain/discomfort (2.07 and 0.89, respectively) and minimal informativity for self-care (1.59 and 0.68, respectively). The mean EQ-5D-5L index, LSS, and VAS scores were 0.74 (SD = 0.26), 0.70 (SD = 0.24), and 0.61 (SD = 0.21), respectively. The Spearman correlations between HRQoL measures were higher than 0.60. The agreement between the EQ-5D-5L index and LSS values was excellent (ICC = 0.970, 95% CI = 0.934-0.984); the agreement was poor-to-good between the EQ-5D-5L index and VAS scores (ICC = 683, 95% CI = 0.388-0.820), and moderate-to-good between the LSS and VAS scores (ICC = 0.789, 95% CI = 0.593-0.862). Conclusions: Our results support the utilization of the EQ-5D-5L instrument in assessing the HRQoL of dystonia patients, and empirical results suggest that the EQ-5D-5L index and LSS measure may be used interchangeably. The findings from this study highlight that HRQoL is complex in patients with dystonia, particularly across different age groups.

Neurosurgical and pharmacological management of dystonia.

Dystonia characterizes a group of neurological movement disorders characterized by abnormal muscle movements, often with repetitive or sustained contraction resulting in abnormal posturing. Different types of dystonia present based on the affected body regions and play a prominent role in determining the potential efficacy of a given intervention. For most patients afflicted with these disorders, an exact cause is rarely identified, so treatment mainly focuses on symptomatic alleviation. Pharmacological agents, such as oral anticholinergic administration and botulinum toxin injection, play a major role in the initial treatment of patients. In more severe and/or refractory cases, focal areas for neurosurgical intervention are identified and targeted to improve quality of life. Deep brain stimulation (DBS) targets these anatomical locations to minimize dystonia symptoms. Surgical ablation procedures and peripheral denervation surgeries also offer potential treatment to patients who do not respond to DBS. These management options grant providers and patients the ability to weigh the benefits and risks for each individual patient profile. This review article explores these pharmacological and neurosurgical management modalities for dystonia, providing a comprehensive assessment of each of their benefits and shortcomings.

RANBP17 Overexpression Restores Nucleocytoplasmic Transport and Ameliorates Neurodevelopment in Induced DYT1 Dystonia Motor Neurons.

DYT1 dystonia is a debilitating neurological movement disorder, and it represents the most frequent and severe form of hereditary primary dystonia. There is currently no cure for this disease due to its unclear pathogenesis. In our previous study utilizing patient-specific motor neurons (MNs), we identified distinct cellular deficits associated with the disease, including a deformed nucleus, disrupted neurodevelopment, and compromised nucleocytoplasmic transport (NCT) functions. However, the precise molecular mechanisms underlying these cellular impairments have remained elusive. In this study, we revealed the genome-wide changes in gene expression in DYT1 MNs through transcriptomic analysis. We found that those dysregulated genes are intricately involved in neurodevelopment and various biological processes. Interestingly, we identified that the expression level of RANBP17, a RAN-binding protein crucial for NCT regulation, exhibited a significant reduction in DYT1 MNs. By manipulating RANBP17 expression, we further demonstrated that RANBP17 plays an important role in facilitating the nuclear transport of both protein and transcript cargos in induced human neurons. Excitingly, the overexpression of RANBP17 emerged as a substantial mitigating factor, effectively restoring impaired NCT activity and rescuing neurodevelopmental deficits observed in DYT1 MNs. These findings shed light on the intricate molecular underpinnings of impaired NCT in DYT1 neurons and provide novel insights into the pathophysiology of DYT1 dystonia, potentially leading to the development of innovative treatment strategies.

ε-sarcoglycan myoclonus-dystonia—overview of neurophysiological, behavioral, and imaging characteristics

Myoclonus-Dystonia is a rare, neurological movement disorder, clinically characterized by myoclonic jerks and dystonic symptoms, such as cervical dystonia and writer’s cramp. Psychiatric symptoms, like anxiety, depression, and addiction, are frequently reported. Monogenic Myoclonus-Dystonia is mostly caused by pathogenic variants in the ε-sarcoglycan gene, which is among other regions highly expressed in the cerebellum. The current pharmacological treatment is not satisfactory. Neurophysiological and imaging studies in this patient population are scarce with partly heterogeneous results and sometimes important limitations. However, some studies point towards subcortical alterations, e.g., of the cerebellum and its connections. Further studies addressing previous limitations are important for a better understanding of the underlying pathology of Myoclonus-Dystonia and might build a bridge for the development of future treatment.

Conclusion instead of exclusion-The clinical diagnosis of functional movement disorders

Functional neurological movement disorders are common in neurological practice and lead to ahigh degree of impairment and chronification. Affected patients usually receive adiagnosis with considerable delay and often do not get disease-specific treatment. The reasons for this delay are related to extensive diagnostic measures to exclude other nonfunctional neurological diseases. As aconsequence, functional movement disorders are typically communicated as diagnoses of exclusion, which makes it difficult for patients to understand and accept the diagnosis. This is particularly unfortunate, because in the majority of patients the diagnosis can be made with confidence based on clinical features, i.e., inconsistency and incongruence. The clarification of the symptoms and the resulting treatment options should be supplemented by patient-friendly explanations of the pathophysiological basis of the disease. In this way, patients are enabled to understand and accept the diagnosis. Moreover, it can put an end to the search for adiagnosis, which can sometimes take decades, and paves the way for treatment. Thus, the diagnosis by exclusion itself becomes the starting point for treatment and can itself have a therapeutic effect.

Determining the impact of specialized care on health outcomes and health care utilization in Parkinsonism

BackgroundAlthough care of Parkinsonism (PKM) is assumed to be optimally provided by movement disorder neurologists within an interdisciplinary clinic model, there is a paucity of published data to support this. ObjectivesTo investigate the impact of movement disorder neurologist care of individuals with Parkinsonism (PKM). MethodsA retrospective exposure design was adopted using administrative data. Incident PKM individuals were identified in billing claims. A nine-year exposure period to movement disorder neurologist, general neurologist and non-neurologist care was calculated based on the billing codes. Regression models were used to test the association of provider exposure on time to death and long-term care (LTC) admission. Linear models were used to test varying provider exposure and hospital admissions, hospital days and emergency department visits. Results1914 incident individuals were identified. There was no difference in PKM mortality, emergency visits, hospital admissions, or hospital days between providers, however exposure to general neurology and non-neurology care was associated with a significantly higher risk of admission to LTC compared to movement disorder neurologist care (HR 1.43; 95% CI 1.09–1.87 for general neurology (p-value = 0.0089); HR 1.61; 95% CI 1.25–2.05 for non-neurology (p-value = 0.0002), respectively. ConclusionMovement disorder neurologist care is associated with a lower risk of admission to LTC over general neurologist care in individuals with PKM.

A Novel Home-Based Telerehabilitation Program Targeting Fall Prevention in Parkinson Disease: A Preliminary Trial.

Falls in a person with Parkinson disease (PwP) are frequent, consequential, and only partially prevented by current therapeutic options. Notably, most falls in PwPs occur in the home or its immediate surroundings; however, our current strategies for fall prevention are clinic-centered. The primary objective of this nonrandomized pilot trial was to investigate the feasibility and preliminary efficacy of the novel implementation of home-based PD telerehabilitation (tele-physical/occupational therapy) focusing on fall risk reduction and home-safety modification. Persons with mild-to-moderate PD who were identified as being at risk of falls by their movement disorders neurologist were recruited from a tertiary movement disorders clinic. After an initial in-person evaluation by the study physical and occupational therapists, 15 patients with PD (Hoehn and Yahr Stage 2 (n = 8) and Stage 3 (n = 7)) participated in 4 biweekly PT/OT televisits with care partner supervision over the course of 10 weeks. The Goal Attainment Scale (GAS) was implemented to assess progress toward individualized PT/OT goals established at baseline. Outcomes were assessed at the end of the intervention at 10 weeks and at a six-month follow-up. Participants completed all 120 protocol-defined televisits without dropouts and adverse events. At 10 weeks, mean composite PT and OT-GAS scores showed significant improvement from baseline (PT: p < 0.001, OT: p < 0.008), which continued at 6 months (PT: p < 0.0005, OT: p < 0.0005). Home-modification recommendations made through novel virtual home-safety tours were cumulatively met by participants at 87% at 10 weeks and 91% at 6 months. Home-based telerehabilitation is a promising new strategy toward fall prevention in PD. The GAS has the potential to serve as an effective and patient-driven primary outcome variable for rehabilitation interventions for heterogeneous PwPs to assess progress toward personalized goals. ClinicalTrial.gov identifier: NCT04600011.

The Neurorehabilitation of Neurological Movement Disorders Requires Rigorous and Sustained Research

Movement disorders that stem from neurological conditions such as stroke, cerebral palsy, multiple sclerosis (MS), Parkinson’s disease (PD), and spinocerebellar degeneration (SCD) can significantly impair a person’s activities of daily living (ADL) [...]

Characterizing differences in retinal and choroidal microvasculature and structure in individuals with Huntington's Disease compared to healthy controls: A cross-sectional prospective study.

To characterize retinal and choroidal microvascular and structural changes in patients who are gene positive for mutant huntingtin protein (mHtt) with symptoms of Huntington's Disease (HD). This study is a cross-sectional comparison of patients who are gene positive for mHtt and exhibit symptoms of HD, either motor manifest or prodromal (HD group), and cognitively normal individuals without a family history of HD (control group). HD patients were diagnosed by Duke movement disorder neurologists based on the Unified Huntington's Disease Rating Scale (UHDRS). Fovea and optic nerve centered OCT and OCTA images were captured using Zeiss Cirrus HD-5000 with AngioPlex. Outcome metrics included central subfield thickness (CST), peripapillary retinal nerve fiber layer (pRNFL) thickness, ganglion cell-inner plexiform layer (GCIPL) thickness, and choroidal vascularity index (CVI) on OCT, and foveal avascular zone (FAZ) area, vessel density (VD), perfusion density (PD), capillary perfusion density (CPD), and capillary flux index (CFI) on OCTA. Generalized estimating equation (GEE) models were used to account for inter-eye correlation. Forty-four eyes of 23 patients in the HD group and 77 eyes of 39 patients in the control group were analyzed. Average GCIPL thickness and FAZ area were decreased in the HD group compared to controls (p = 0.001, p < 0.001). No other imaging metrics were significantly different between groups. Patients in the HD group had decreased GCIPL thickness and smaller FAZ area, highlighting the potential use of retinal biomarkers in detecting neurodegenerative changes in HD.

Emerging Subspecialties: Pediatric Movement Disorders Neurology.

Pediatric movement disorders (PMD) neurologists care for infants, children, and adolescents with conditions that disrupt typical movement; serving as important subspecialist child neurologists in both academic and private practice settings. In contrast to adult movement disorders neurologists whose "bread and butter" is hypokinetic Parkinson disease, PMD subspecialty practice is often dominated by hyperkinetic movement disorders including tics, dystonia, chorea, tremor, and myoclonus. PMD neurology practice intersects with a variety of subspecialties, including neonatology, developmental pediatrics, rehabilitation medicine, epilepsy, child & adolescent psychiatry, psychology, orthopedics, genetics & metabolism, and neurosurgery. Over the past several decades, significant advancements in the PMD field have included operationalizing definitions for distinct movement disorders, recognizing the spectrum of clinical phenotypes, expanding research on genetic and neuroimmunologic causes of movement disorders, and advancing available treatments. Subspecialty training in PMD provides trainees with advanced clinical, diagnostic, procedural, and management skills that reflect the complexities of contemporary practice. The child neurologist who is fascinated by the intricacies of child motor development, appreciates the power of observation skills coupled with a thoughtful physical examination, and is excited by the challenge of the unknown may be well-suited to a career as a PMD specialist.

Movement Disorders Induced by Neurotoxins

Parkinson’s disease (PD), first described by James Parkinson, remains the most prevalent neurological movement disorder in aging populations. This debilitating condition is characterized by the progressive degeneration of dopaminergic neurons within the substantia nigra (SN) pars compacta. Despite its discovery over two centuries ago, the etiology of PD remains elusive. To gain deeper insights into the underlying pathology, disease progression mechanisms, and potential therapeutic targets for symptom amelioration, animal models have emerged as invaluable tools. Among these, neurotoxins such as 1-methyl-4-phenyl-1,2,3,6-tetrahydropyridine (MPTP) and 6-hydroxydopamine (6-OHDA) are extensively utilized to induce acute PD models in mice and rats, respectively. This review comprehensively explores the contributions of these neurotoxin-induced models toward enhancing our understanding of PD pathogenesis and advancing therapeutic interventions. Additionally, it highlights key findings and promising avenues for future research in this critical area of movement disorders.

Wearable Accelerometer and Gyroscope Sensors for Estimating the Severity of Essential Tremor.

Several validated clinical scales measure the severity of essential tremor (ET). Their assessments are subjective and can depend on familiarity and training with scoring systems. We propose a multi-modal sensing using a wearable inertial measurement unit for estimating scores on the Fahn-Tolosa-Marin tremor rating scale (FTM) and determine the classification accuracy within the tremor type. 17 ET participants and 18 healthy controls were recruited for the study. Two movement disorder neurologists who were blinded to prior clinical information viewed video recordings and scored the FTM. Participants drew a guided Archimedes spiral while wearing an inertial measurement unit placed at the mid-point between the lateral epicondyle of the humerus and the anatomical snuff box. Acceleration and gyroscope recordings were analyzed. The ratio of the power spectral density between frequency bands 0.5-4 Hz and 4-12 Hz, and the sum of power spectrum density over the entire spectrum of 2-74 Hz, for both accelerometer and gyroscope data, were computed. FTM was estimated using regression model and classification using SVM was validated using the leave-one-out method. Regression analysis showed a moderate to good correlation when individual features were used, while correlation was high ([Formula: see text] = 0.818) when suitable features of the gyro and accelerometer were combined. The accuracy for two-class classification of the combined features using SVM was 91.42% while for four-class it was 68.57%. Potential applications of this novel wearable sensing method using a wearable Inertial Measurement Unit (IMU) include monitoring of ET and clinical trials of new treatments for the disorder.

Pacemaker, organ or walking stick? Pre-op association with and post-op subjective perception of a deep brain stimulation device

This study was conducted in a pre-post design with a survey of patients who had undergone deep brain stimulation (DBS) as treatment for a neurological movement disorder. The aim of the study was to compare patients' expectations and beliefs before a DBS intervention with patients' subjective experience of this intervention. The longitudinal study of patients (n=132) with an indication for DBS therapy was based on a written survey at the time points of preoperative screening (pre-op) and one-year follow-up (post-op). Preoperatively, a clear majority of respondents believed DSB to be similar to a pacemaker intervention, but one year after the intervention less than one third did so, as they compared DBS to using a walking stick or glasses. The experience of DBS in the patient's own body seems to be comparable by means of individually different associations, whereby the comparison with non-invasive aids predominates postoperatively. The discussion of these descriptions in the educational interview can contribute to a realistic horizon of patients' expectations before DBS.

Deep learning performs essential tremor spirography rating with same proficiency as two senior movement disorders neurologists

Deep learning performs essential tremor spirography rating with same proficiency as two senior movement disorders neurologists

Radiosurgical Thalamotomy for Essential Tremor: A Prospective Study with Blinded Assessment by a Movement Disorder Neurologist

To prospectively evaluate the effectiveness and safety of radiosurgical thalamotomy in patients with Essential Tremor (ET). Patients underwent stereotactic radiation VIM thalamotomy by a dedicated Cobalt 60 intracranial radiosurgery platform in a fixed headframe. 130 Gy was prescribed to the 100% isodose point with single 4mm collimator. Effectiveness was evaluated using validated tremor rating scale: upper limb CRST Part B ratings (CRST) in comparison to baseline. To be eligible minimal CRST score of 2 in writing or drawing was required. Writing and drawing score assessments were conducted by a single movement disorder neurologist in a blinded fashion. Mean writing and drawing scores were statistically compared with paired t-test. A total of 213 cases (203 patients) were enrolled in the study, 7 cases (and individual patients) withdrew prior to treatment. The total number of thalamotomies performed was 206. Ten patients had right and left thalamotomies on study. Eleven patients underwent a contralateral thalamotomy but their initial thalamotomy was not a case in this study. 30 patients withdrew or were lost to follow-up, 2 patients were withdrawn due to not meeting medication criteria after treatment, 12 patients were withdrawn not meeting CRST rating criteria. Two patients were lost to follow-up immediately following the procedure (one of whom was a patient who underwent right and left staged procedures - no follow-up was obtained after the second procedure). 177 cases completed 6-month follow-up; 169 cases completed 1 year follow-up; 113 cases completed 2-year follow-up. For 189 total evaluable cases pre-treatment, drawing score mean was 2.86 +/- 0.84, pre-treatment writing score mean was 2.96 +/- 0.86. WRITING At one year: 143 cases (writing side targeted) mean writing score 1.28 +/-1.11 P<.01. 77% of cases improved by 1 point or greater. At two years: 102 cases 1.48+/-1.11, P<.01. 78% of cases improved by 1 point or greater. DRAWING At one year: 169 cases mean drawing score 1.42 +/-0.97, P<.01. 71% of cases improved by 1 point or greater. At two years: 113 cases mean drawing score 1.49+/-0.98, P<.01. 71% of cases improved by 1 point or greater. Cumulative side effects at 6 months and 1 year were seen in 17 of 175 of patients. 12 mild, 3 moderate and 2 severe. Mild side effects included numbness of the fingers, lip or hand and mild dysarthria. Severe side effects were 1 thalamic hemorrhage resulting in contralateral weakness. 1 patient developed foot drop and slurring of speech. Cumulative 2-year side effects were 15 mild, 3 moderate and 3 severe (1 additional thalamic hemorrhage). Stereotactic radiosurgical thalamotomy provided a significant reduction in tremor at 1 and 2 years. The treatment is an effective noninvasive treatment option worthy of consideration in many patients. The treatment has a low but non-zero risk of significant SEs.

A mini-review: recent advancements in temporal interference stimulation in modulating brain function and behavior.

Numerous studies have assessed the effect of Temporal Interference (TI) on human performance. However, a comprehensive literature review has not yet been conducted. Therefore, this review aimed to search PubMed and Web of Science databases for TI-related literature and analyze the findings. We analyzed studies involving preclinical, human, and computer simulations, and then discussed the mechanism and safety of TI. Finally, we identified the gaps and outlined potential future directions. We believe that TI is a promising technology for the treatment of neurological movement disorders, due to its superior focality, steerability, and tolerability compared to traditional electrical stimulation. However, human experiments have yielded fewer and inconsistent results, thus animal and simulation experiments are still required to perfect stimulation protocols for human trials.

ELectronic Archimedes spiral Neural Network (ELANN)

The Archimedes spiral is a clinical tool that aids in the diagnosis and monitoring of essential tremor. However, spiral ratings may vary based on experience and training of the rating physician. This study sought to generate an objective standard model for tremor evaluation using convolutional neural networks.One senior movement disorders neurologist (Neurologist 1) with over 30 years of clinical experience used the Bain and Findley Spirography Rating Scale to rate 1653 Archimedes spiral images from 46 essential tremor patients (mild to severe tremor) and 75 control subjects (no to mild tremor). Neurologist 1's labels were used as the reference standard to train the model. After training the model, a randomly selected subset of spiral testing data was re-evaluated by Neurologist 1, by a second senior movement disorders neurologist (Neurologist 2) with over 27 years of clinical experience, and by our model. Cohen's Weighted Kappa 95% confidence intervals were calculated from all rater comparisons to determine if our model performs with the same proficiency as two senior movement disorders neurologists.The Cohen's Weighted Kappa 95% confidence intervals for the agreement between the reference standard scores and Neurologist 1's rerated scores, for the agreement between the reference standard scores and Neurologist 2's scores, and for the agreement between the reference standard scores and our model's scores were 0.93–0.98, 0.86–0.94, and 0.89–0.96, respectively.With overlapping Cohen's Weighted Kappa 95% confidence intervals for all agreement comparisons, we demonstrate that our model evaluates spirals with the same proficiency as two senior movement disorders neurologists.

The Parkinson's disease waiting room of the future: measurements, not magazines.

Utilizing technology to precisely quantify Parkinson's disease motor symptoms has evolved over the past 50 years from single point in time assessments using traditional biomechanical approaches to continuous monitoring of performance with wearables. Despite advances in the precision, usability, availability and affordability of technology, the "gold standard" for assessing Parkinson's motor symptoms continues to be a subjective clinical assessment as none of these technologies have been fully integrated into routine clinical care of Parkinson's disease patients. To facilitate the integration of technology into routine clinical care, the Develop with Clinical Intent (DCI) model was created. The DCI model takes a unique approach to the development and integration of technology into clinical practice by focusing on the clinical problem to be solved by technology rather than focusing on the technology and then contemplating how it could be integrated into clinical care. The DCI model was successfully used to develop the Parkinson's disease Waiting Room of the Future (WROTF) within the Center for Neurological Restoration at the Cleveland Clinic. Within the WROTF, Parkinson's disease patients complete the self-directed PD-Optimize application on an iPad. The PD-Optimize platform contains cognitive and motor assessments to quantify PD symptoms that are difficult and time-consuming to evaluate clinically. PD-Optimize is completed by the patient prior to their medical appointment and the results are immediately integrated into the electronic health record for discussion with the movement disorder neurologist. Insights from the clinical use of PD-Optimize has spurred the development of a virtual reality technology to evaluate instrumental activities of daily living in PD patients. This new technology will undergo rigorous assessment and validation as dictated by the DCI model. The DCI model is intended to serve as a health enablement roadmap to formalize and accelerate the process of bringing the advantages of cutting-edge technology to those who could benefit the most: the patient.

Utility of Neurophysiological Evaluation in Movement Disorders Clinical Practice.

Quantitative and objective neurophysiological assessment can help to define the predominant phenomenology and provide diagnoses that have prognostic and therapeutic implications for movement disorders. Evaluate the agreement between initial indications and final diagnoses after neurophysiological evaluations in a specialized movement disorders center. Electrophysiological studies conducted for movement disorders from 2003 to 2021 were reviewed. The indications were classified according to predominant phenomenology and the diagnoses categorized in subgroups of phenomenology. A total of 509 studies were analyzed. 51% (259) of patients were female, with a mean age of 51 years (ranges 5 to 89 years). The most common reasons for referral were evaluation of functional movement disorders (FMD), followed by jerky movements, tremor and postural instability. Regarding FMD referrals, there was a diagnostic change in 13% of the patients after electrophysiological assessment. The patients with jerky movements as indication had a diagnosis other than myoclonus in 27% of them, and tremor was not confirmed in 20% of the cases. In patients with an electrophysiological diagnosis of FMD, it was not suspected in 30% of the referrals. Similarly, tremor was not mentioned in the referral of 17% of the patients with this electrophysiological diagnosis and myoclonus was not suspected in 13% of the cases. Electrophysiological assessment has utility in the evaluation of movement disorders, even in patients evaluated by movement disorders neurologists. More studies are needed to standardize the protocols between centers and to promote the availability and use of these techniques among movement disorders clinics.

Health care experiences of people with Parkinson’s disease in Australia

BackgroundLittle is known about the health care experiences of people with Parkinson’s disease (PwP) living in Australia. Exploring health care experiences can provide insight into service gaps which can then help direct quality improvement, such as improving communication between patients and health professionals.MethodsThis study aimed to examine the health care experiences of a sample of PwP living in Australia using the Patient-Centered Questionnaire for Parkinson’s disease (PCQ-PD). Participants were recruited from four sources located in Victoria, Australia: (1) a metropolitan Movement Disorders Program (Group 1); (2) metropolitan based movement disorder neurologists working as sole practitioners and not within multidisciplinary teams (Group 2); (3) a regional based multidisciplinary PD program (Group 3); and (4) PD support groups in regional and rural Victorian towns without PD specialist programs (Group 4). Scores derived from the PCQ-PD included the overall patient-centered score (OPS), six sub-scale experience scores (SES) and the quality improvement scores (QIS). Health care experiences were compared between Groups 1, 2, 3 and 4 and multivariate linear regression models were used to explore factors contributing to patient-centeredness.Results227 participants reported a mean (SD) OPS score of 1.8 (SD 0.5) with no significant differences between groups. The rating for the Tailored Information subscale was low, (mean 1.3, SD 0.5), with Group 2 having a significantly lower score, 1.1 (SD 0.5), compared to Group 1, 1.4 (SD 0.5) (p = 0.048). Experiences of Continuity of Care and Collaboration of Professionals were rated significantly lower by Group 2, 1.3 (SD 1.0) compared to Groups 1, 1.8 (SD 0.9) (p = 0.018) and 3, 2.1 (SD 0.8) (p = 0.002). Care aspects related to the Tailored Information subscale were prioritised for improvement by all groups. The main predictors of positive health care experiences were disease duration (coeff 0.02; 95% CI 0.00, 0.04) and living with another person (coeff 0.27: 95% CI 0.03, 0.51).ConclusionThis sample of participants with PD had poor experiences of several aspects of care known to be important in the provision of quality PD care. They prioritised the improvement of personalised health care information and better continuity of care and collaboration between health professionals.