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1.
Front Neurol ; 15: 1386608, 2024.
Article in English | MEDLINE | ID: mdl-38803644

ABSTRACT

The rising prevalence of Parkinson's disease (PD) globally presents a significant public health challenge for national healthcare systems, particularly in low-to-middle income countries, such as Thailand, which may have insufficient resources to meet these escalating healthcare needs. There are also many undiagnosed cases of early-stage PD, a period when therapeutic interventions would have the most value and least cost. The traditional "passive" approach, whereby clinicians wait for patients with symptomatic PD to seek treatment, is inadequate. Proactive, early identification of PD will allow timely therapeutic interventions, and digital health technologies can be scaled up in the identification and early diagnosis of cases. The Parkinson's disease risk survey (TCTR20231025005) aims to evaluate a digital population screening platform to identify undiagnosed PD cases in the Thai population. Recognizing the long prodromal phase of PD, the target demographic for screening is people aged ≥ 40 years, approximately 20 years before the usual emergence of motor symptoms. Thailand has a highly rated healthcare system with an established universal healthcare program for citizens, making it ideal for deploying a national screening program using digital technology. Designed by a multidisciplinary group of PD experts, the digital platform comprises a 20-item questionnaire about PD symptoms along with objective tests of eight digital markers: voice vowel, voice sentences, resting and postural tremor, alternate finger tapping, a "pinch-to-size" test, gait and balance, with performance recorded using a mobile application and smartphone's sensors. Machine learning tools use the collected data to identify subjects at risk of developing, or with early signs of, PD. This article describes the selection and validation of questionnaire items and digital markers, with results showing the chosen parameters and data analysis methods to be robust, reliable, and reproducible. This digital platform could serve as a model for similar screening strategies for other non-communicable diseases in Thailand.

3.
PLoS One ; 15(12): e0243051, 2020.
Article in English | MEDLINE | ID: mdl-33264321

ABSTRACT

BACKGROUND: The concerns of people with Parkinson's disease (PD) about their disease are often different from the objective clinical picture and subject to various influencing factors, including disease progression. Currently our understanding of these concerns is limited, particularly in Asian countries. METHODS: A 50-item survey on Parkinson's Disease Patients' Concerns (PDPC Survey) was developed by a multidisciplinary care team. The subjective greatest concerns (most commonly concerning symptoms) of patients at a specialist centre in Bangkok, Thailand, were explored and categorised according to disease stage and age at onset of PD. RESULTS: Data for 222 patients showed concerns varied widely. Motor symptoms giving the greatest concern were problems with walking and/or balance (40.5% of patients), while the most commonly concerning non-motor symptom (NMS) was constipation (41.0%). Patterns were observed amongst different patient subgroups. Early PD patients (H&Y stage 1) were more concerned about NMS than motor symptoms, while the reverse was true for advanced PD patients. Young-onset PD patients showed significantly greater concerns than typical-onset patients about motor symptoms relating to social functioning, working and stigmatisation, such as speech (p = 0.003). CONCLUSIONS: This study, in an Asian patient cohort, provides an assessment of a wide range of PD patients' concerns, encompassing not only motor symptoms and NMS, but also treatment-related adverse events, care in the advanced stage, and the need for assistive devices. Identifying the concerns of individual PD patients and implementing a patient-centred approach to care is critical to their wellbeing and optimal outcomes. The PDPC survey can help healthcare teams build a more accurate picture of patients' experiences to inform clinical management.


Subject(s)
Parkinson Disease/epidemiology , Age of Onset , Aged , Cohort Studies , Female , Health Personnel/statistics & numerical data , Humans , Male , Parkinson Disease/diagnosis , Parkinson Disease/pathology , Parkinson Disease/therapy
4.
Patient Relat Outcome Meas ; 11: 143-148, 2020.
Article in English | MEDLINE | ID: mdl-32848490

ABSTRACT

PURPOSE: People with Parkinson's (PwP) often feel stigmatized, especially when their symptoms are visually prominent. In some countries, public awareness of Parkinson's disease can be minimal, leading to social challenges for PwP. PATIENTS AND METHODS: A public educational campaign using videos (VDO) showing 5 PwP in different social situations that their symptoms could be a source of inconvenience to others were launched on Facebook (FB) and television (TV). We describe the process and report the impact of the campaign on patients and the public. Number of shares and likes and the first 100 comments on FB were analyzed. RESULTS: There were almost 1 million views, 680,000 likes, and 256,000 shares in the Center's and popular Facebook Pages within 24 hours, subsequently reaching 4.4 million views, 138,000 likes, and 78,000 shares. Patients reported changed behavior and demeanor by the public towards them. The public's comments ranged from stating that they have seen PwP without knowing what it was to requests for more information about PD to thanks for the informative VDO. People also shared their experiences with PwP. CONCLUSION: The campaign was impactful in creating awareness about PD. Creating appealing content with appropriate video length and collaborating with community groups that have relevant skills can help in creating and disseminating an educational video which creates a significant impact on society as a whole. This can be emulated to educate the public about other diseases.

5.
Parkinsonism Relat Disord ; 72: 82-87, 2020 03.
Article in English | MEDLINE | ID: mdl-32146380

ABSTRACT

An international panel of movement disorders specialists explored the views and perceptions of people with Parkinson's disease (PD) about their condition and its treatment, including the potential mismatch between the clinician's view of the patient's condition and their own view of what aspects of the disease most affect their daily lives. The initiative was focused on Asian countries, so participants comprised experts in the management of PD from key centers in Asia, with additional insight provided by European and the North American movement disorders experts. Analysis of peer-reviewed publications on patient perceptions of PD and the factors that they consider important to their wellbeing identified several contributing factors to the mismatch of views, including gaps in knowledge of PD and its treatment, an understanding of the clinical heterogeneity of PD, and the importance of a multidisciplinary approach to patient care. The faculty proposed options to bridge these gaps to ensure that PD patients receive the personalized treatment they need to achieve the best possible outcomes. It was considered essential to improve patient knowledge about PD and its treatment, as well as increasing the awareness of clinicians of PD heterogeneity in presentation and treatment response. A multidisciplinary and shared-care approach to PD was needed alongside the use of patient-centered outcome measures in clinical trials and clinical practice to better capture the patient experience and improve the delivery of individualized therapy.


Subject(s)
Delivery of Health Care/standards , Health Knowledge, Attitudes, Practice , Parkinson Disease/therapy , Patient-Centered Care/standards , Consensus , Consensus Development Conferences as Topic , Humans , Patient Education as Topic
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