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      Parkinson’s disease: current assessment methods and wearable devices for evaluation of movement disorder motor symptoms - a patient and healthcare professional perspective

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          Abstract

          Background

          Parkinson’s disease is the second most common long-term chronic, progressive, neurodegenerative disease, affecting more than 10 million people worldwide. There has been a rising interest in wearable devices for evaluation of movement disorder diseases such as Parkinson’s disease due to the limitations in current clinic assessment methods such as Unified Parkinson’s Disease Rating Scale (UPDRS) and the Hoehn and Yahr (HY) scale. However, there are only a few commercial wearable devices available, which, in addition, have had very limited adoption and implementation. This inconsistency may be due to a lack of users’ perspectives in terms of device design and implementation. This study aims to identify the perspectives of healthcare professionals and patients linked to current assessment methods and to identify preferences, and requirements of wearable devices.

          Methods

          This was a qualitative study using semi-structured interviews followed by focus groups. Transcripts from sessions were analysed using an inductive thematic approach.

          Results

          It was noted that the well-known assessment process such as Unified Parkinson’s Disease Rating Scale (UPDRS) was not used routinely in clinics since it is time consuming, subjective, inaccurate, infrequent and dependent on patients’ memories. Participants suggested that objective assessment methods are needed to increase the chance of effective treatment. The participants’ perspectives were positive toward using wearable devices, particularly if they were involved in early design stages. Patients emphasized that the devices should be comfortable, but they did not have any concerns regarding device visibility or data privacy transmitted over the internet when it comes to their health. In terms of wearing a monitor, the preferable part of the body for all participants was the wrist. Healthcare professionals stated a need for an economical solution that is easy to interpret. Some design aspects identified by patients included clasps, material choice, and form factor.

          Conclusion

          The study concluded that current assessment methods are limited. Patients’ and healthcare professionals’ involvement in wearable devices design process has a pivotal role in terms of ultimate user acceptance. This includes the provision of additional functions to the wearable device, such as fall detection and medication reminders, which could be attractive features for patients.

          Supplementary Information

          The online version contains supplementary material available at (doi:10.1186/s12883-020-01996-7).

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          Most cited references61

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          Movement Disorder Society-sponsored revision of the Unified Parkinson's Disease Rating Scale (MDS-UPDRS): scale presentation and clinimetric testing results.

          We present a clinimetric assessment of the Movement Disorder Society (MDS)-sponsored revision of the Unified Parkinson's Disease Rating Scale (MDS-UPDRS). The MDS-UDPRS Task Force revised and expanded the UPDRS using recommendations from a published critique. The MDS-UPDRS has four parts, namely, I: Non-motor Experiences of Daily Living; II: Motor Experiences of Daily Living; III: Motor Examination; IV: Motor Complications. Twenty questions are completed by the patient/caregiver. Item-specific instructions and an appendix of complementary additional scales are provided. Movement disorder specialists and study coordinators administered the UPDRS (55 items) and MDS-UPDRS (65 items) to 877 English speaking (78% non-Latino Caucasian) patients with Parkinson's disease from 39 sites. We compared the two scales using correlative techniques and factor analysis. The MDS-UPDRS showed high internal consistency (Cronbach's alpha = 0.79-0.93 across parts) and correlated with the original UPDRS (rho = 0.96). MDS-UPDRS across-part correlations ranged from 0.22 to 0.66. Reliable factor structures for each part were obtained (comparative fit index > 0.90 for each part), which support the use of sum scores for each part in preference to a total score of all parts. The combined clinimetric results of this study support the validity of the MDS-UPDRS for rating PD.
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            Parkinson's disease: clinical features and diagnosis.

            Parkinson's disease (PD) is a progressive neurological disorder characterised by a large number of motor and non-motor features that can impact on function to a variable degree. This review describes the clinical characteristics of PD with emphasis on those features that differentiate the disease from other parkinsonian disorders. A MedLine search was performed to identify studies that assess the clinical characteristics of PD. Search terms included "Parkinson's disease", "diagnosis" and "signs and symptoms". Because there is no definitive test for the diagnosis of PD, the disease must be diagnosed based on clinical criteria. Rest tremor, bradykinesia, rigidity and loss of postural reflexes are generally considered the cardinal signs of PD. The presence and specific presentation of these features are used to differentiate PD from related parkinsonian disorders. Other clinical features include secondary motor symptoms (eg, hypomimia, dysarthria, dysphagia, sialorrhoea, micrographia, shuffling gait, festination, freezing, dystonia, glabellar reflexes), non-motor symptoms (eg, autonomic dysfunction, cognitive/neurobehavioral abnormalities, sleep disorders and sensory abnormalities such as anosmia, paresthesias and pain). Absence of rest tremor, early occurrence of gait difficulty, postural instability, dementia, hallucinations, and the presence of dysautonomia, ophthalmoparesis, ataxia and other atypical features, coupled with poor or no response to levodopa, suggest diagnoses other than PD. A thorough understanding of the broad spectrum of clinical manifestations of PD is essential to the proper diagnosis of the disease. Genetic mutations or variants, neuroimaging abnormalities and other tests are potential biomarkers that may improve diagnosis and allow the identification of persons at risk.
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              Movement Disorder Society Task Force report on the Hoehn and Yahr staging scale: status and recommendations.

              The Movement Disorder Society Task Force for Rating Scales for Parkinson's disease (PD) prepared a critique of the Hoehn and Yahr scale (HY). Strengths of the HY scale include its wide utilization and acceptance. Progressively higher stages correlate with neuroimaging studies of dopaminergic loss, and high correlations exist between the HY scale and some standardized scales of motor impairment, disability, and quality of life. Weaknesses include the scale's mixing of impairment and disability and its non-linearity. Because the HY scale is weighted heavily toward postural instability as the primary index of disease severity, it does not capture completely impairments or disability from other motor features of PD and gives no information on nonmotor problems. Direct clinimetric testing of the HY scale has been very limited, but the scale fulfills at least some criteria for reliability and validity, especially for the midranges of the scale (Stages 2-4). Although a "modified HY scale" that includes 0.5 increments has been adopted widely, no clinimetric data are available on this adaptation. The Task Force recommends that: (1) the HY scale be used in its original form for demographic presentation of patient groups; (2) when the HY scale is used for group description, medians and ranges should be reported and analysis of changes should use nonparametric methods; (3) in research settings, the HY scale is useful primarily for defining inclusion/exclusion criteria; (4) to retain simplicity, clinicians should "rate what you see" and therefore incorporate comorbidities when assigning a HY stage; and (5) because of the wide usage of the modified HY scale with 0.5 increments, this adaptation warrants clinimetric testing. Without such testing, however, the original five-point scales should be maintained.
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                Author and article information

                Contributors
                Ghayth.almahadin2016@my.ntu.ac.uk
                ahmad.lotfi@ntu.ac.uk
                evazysk@psych.ubc.ca
                luke.siena@ntu.ac.uk
                Marie.McCarthy@iconplc.com
                philip.breedon@ntu.ac.uk
                Journal
                BMC Neurol
                BMC Neurol
                BMC Neurology
                BioMed Central (London )
                1471-2377
                18 November 2020
                18 November 2020
                2020
                : 20
                : 419
                Affiliations
                [1 ]GRID grid.12361.37, ISNI 0000 0001 0727 0669, School of Science and Technology, Nottingham Trent University, ; Clifton Lane, Nottingham, NG11 8NS UK
                [2 ]GRID grid.17091.3e, ISNI 0000 0001 2288 9830, Department of Psychology, University of British Columbia in Vancouver, ; West Mall, Vancouver, V6T 1Z4 Canada
                [3 ]GRID grid.12361.37, ISNI 0000 0001 0727 0669, School Of Architecture Design & Built Environment, Nottingham Trent University, ; Goldsmith Street, Nottingham, NG1 4FQ UK
                [4 ]ICON PLC., South County Business Park, Dublin, Ireland
                Article
                1996
                10.1186/s12883-020-01996-7
                7677815
                33208135
                883c4aa5-b07f-4839-93a0-6fb005d144c6
                © The Author(s) 2020

                Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

                History
                : 16 April 2020
                : 9 November 2020
                Funding
                Funded by: FundRef http://dx.doi.org/10.13039/100010016, Nottingham Trent University;
                Funded by: ICON plc.
                Categories
                Research Article
                Custom metadata
                © The Author(s) 2020

                Neurology
                parkinson’s disease,focus groups,interviews,healthcare professionals,patients,wearable devices,qualitative analysis,preferences

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