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      The Views and Needs of People With Parkinson Disease Regarding Wearable Devices for Disease Monitoring: Mixed Methods Exploration

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          Abstract

          Background

          Wearable devices can diagnose, monitor, and manage neurological disorders such as Parkinson disease. With a growing number of wearable devices, it is no longer a case of whether a wearable device can measure Parkinson disease motor symptoms, but rather which features suit the user. Concurrent with continued device development, it is important to generate insights on the nuanced needs of the user in the modern era of wearable device capabilities.

          Objective

          This study aims to understand the views and needs of people with Parkinson disease regarding wearable devices for disease monitoring and management.

          Methods

          This study used a mixed method parallel design, wherein survey and focus groups were concurrently conducted with people living with Parkinson disease in Munster, Ireland. Surveys and focus group schedules were developed with input from people with Parkinson disease. The survey included questions about technology use, wearable device knowledge, and Likert items about potential device features and capabilities. The focus group participants were purposively sampled for variation in age (all were aged >50 years) and sex. The discussions concerned user priorities, perceived benefits of wearable devices, and preferred features. Simple descriptive statistics represented the survey data. The focus groups analyzed common themes using a qualitative thematic approach. The survey and focus group analyses occurred separately, and results were evaluated using a narrative approach.

          Results

          Overall, 32 surveys were completed by individuals with Parkinson disease. Four semistructured focus groups were held with 24 people with Parkinson disease. Overall, the participants were positive about wearable devices and their perceived benefits in the management of symptoms, especially those of motor dexterity. Wearable devices should demonstrate clinical usefulness and be user-friendly and comfortable. Participants tended to see wearable devices mainly in providing data for health care professionals rather than providing feedback for themselves, although this was also important. Barriers to use included poor hand function, average technology confidence, and potential costs. It was felt that wearable device design that considered the user would ensure better compliance and adoption.

          Conclusions

          Wearable devices that allow remote monitoring and assessment could improve health care access for patients living remotely or are unable to travel. COVID-19 has increased the use of remotely delivered health care; therefore, future integration of technology with health care will be crucial. Wearable device designers should be aware of the variability in Parkinson disease symptoms and the unique needs of users. Special consideration should be given to Parkinson disease–related health barriers and the users’ confidence with technology. In this context, a user-centered design approach that includes people with Parkinson disease in the design of technology will likely be rewarded with improved user engagement and the adoption of and compliance with wearable devices, potentially leading to more accurate disease management, including self-management.

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          Most cited references57

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          Using thematic analysis in psychology

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            MDS clinical diagnostic criteria for Parkinson's disease.

            This document presents the Movement Disorder Society Clinical Diagnostic Criteria for Parkinson's disease (PD). The Movement Disorder Society PD Criteria are intended for use in clinical research but also may be used to guide clinical diagnosis. The benchmark for these criteria is expert clinical diagnosis; the criteria aim to systematize the diagnostic process, to make it reproducible across centers and applicable by clinicians with less expertise in PD diagnosis. Although motor abnormalities remain central, increasing recognition has been given to nonmotor manifestations; these are incorporated into both the current criteria and particularly into separate criteria for prodromal PD. Similar to previous criteria, the Movement Disorder Society PD Criteria retain motor parkinsonism as the core feature of the disease, defined as bradykinesia plus rest tremor or rigidity. Explicit instructions for defining these cardinal features are included. After documentation of parkinsonism, determination of PD as the cause of parkinsonism relies on three categories of diagnostic features: absolute exclusion criteria (which rule out PD), red flags (which must be counterbalanced by additional supportive criteria to allow diagnosis of PD), and supportive criteria (positive features that increase confidence of the PD diagnosis). Two levels of certainty are delineated: clinically established PD (maximizing specificity at the expense of reduced sensitivity) and probable PD (which balances sensitivity and specificity). The Movement Disorder Society criteria retain elements proven valuable in previous criteria and omit aspects that are no longer justified, thereby encapsulating diagnosis according to current knowledge. As understanding of PD expands, the Movement Disorder Society criteria will need continuous revision to accommodate these advances.
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              Parkinson disease

              Parkinson disease is the second-most common neurodegenerative disorder that affects 2-3% of the population ≥65 years of age. Neuronal loss in the substantia nigra, which causes striatal dopamine deficiency, and intracellular inclusions containing aggregates of α-synuclein are the neuropathological hallmarks of Parkinson disease. Multiple other cell types throughout the central and peripheral autonomic nervous system are also involved, probably from early disease onwards. Although clinical diagnosis relies on the presence of bradykinesia and other cardinal motor features, Parkinson disease is associated with many non-motor symptoms that add to overall disability. The underlying molecular pathogenesis involves multiple pathways and mechanisms: α-synuclein proteostasis, mitochondrial function, oxidative stress, calcium homeostasis, axonal transport and neuroinflammation. Recent research into diagnostic biomarkers has taken advantage of neuroimaging in which several modalities, including PET, single-photon emission CT (SPECT) and novel MRI techniques, have been shown to aid early and differential diagnosis. Treatment of Parkinson disease is anchored on pharmacological substitution of striatal dopamine, in addition to non-dopaminergic approaches to address both motor and non-motor symptoms and deep brain stimulation for those developing intractable L-DOPA-related motor complications. Experimental therapies have tried to restore striatal dopamine by gene-based and cell-based approaches, and most recently, aggregation and cellular transport of α-synuclein have become therapeutic targets. One of the greatest current challenges is to identify markers for prodromal disease stages, which would allow novel disease-modifying therapies to be started earlier.
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                Author and article information

                Contributors
                Journal
                JMIR Form Res
                JMIR Form Res
                JFR
                JMIR Formative Research
                JMIR Publications (Toronto, Canada )
                2561-326X
                January 2022
                6 January 2022
                : 6
                : 1
                : e27418
                Affiliations
                [1 ] Centre for Gerontology and Rehabilitation School of Medicine University College Cork Cork Ireland
                [2 ] Tyndall National Institute University College Cork Cork Ireland
                [3 ] Research, Development and Innovation Activities & Physiotherapy Education Karelia University of Applied Sciences Joensuu Finland
                [4 ] School of Computing, Engineering and Intelligent Systems Faculty of Computing, Engineering and the Built Environment Ulster University Magee United Kingdom
                [5 ] Department of Public Health and Clinical Medicine Umeå University Umeå Sweden
                Author notes
                Corresponding Author: Lorna Kenny lorna.kenny@ 123456ucc.ie
                Author information
                https://orcid.org/0000-0002-5351-3091
                https://orcid.org/0000-0003-0712-2222
                https://orcid.org/0000-0002-0509-3141
                https://orcid.org/0000-0002-6854-8975
                https://orcid.org/0000-0002-0671-5678
                https://orcid.org/0000-0002-7752-2240
                https://orcid.org/0000-0003-4188-4482
                https://orcid.org/0000-0002-7479-9922
                https://orcid.org/0000-0001-6293-6232
                https://orcid.org/0000-0002-3517-2182
                https://orcid.org/0000-0003-3534-456X
                https://orcid.org/0000-0001-7790-9552
                Article
                v6i1e27418
                10.2196/27418
                8778562
                34989693
                10c8d008-95b4-458c-9fe9-35f689b724f5
                ©Lorna Kenny, Kevin Moore, Clíona O' Riordan, Siobhan Fox, John Barton, Salvatore Tedesco, Marco Sica, Colum Crowe, Antti Alamäki, Joan Condell, Anna Nordström, Suzanne Timmons. Originally published in JMIR Formative Research (https://formative.jmir.org), 06.01.2022.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License ( https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in JMIR Formative Research, is properly cited. The complete bibliographic information, a link to the original publication on https://formative.jmir.org, as well as this copyright and license information must be included.

                History
                : 28 January 2021
                : 14 April 2021
                : 23 June 2021
                : 1 August 2021
                Categories
                Original Paper
                Original Paper

                parkinson disease,wearable devices,technology,mixed method,focus group,survey,mobile phone

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