scholarly journals Personalized care management for persons with Parkinson's disease: A telenursing solution

2020 ◽  
Vol 3 ◽  
pp. 100070
Author(s):  
Francesca Mancini ◽  
Angelika D. van Halteren ◽  
Tania Carta ◽  
Sue Thomas ◽  
Bastiaan R. Bloem ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Care Management ◽  
Personalized Care

scholarly journals Personalized Care Management for Persons with Parkinson’s Disease

2020 ◽  
Vol 10 (s1) ◽  
pp. S11-S20
Author(s):  
Angelika D. van Halteren ◽  
Marten Munneke ◽  
Eva Smit ◽  
Sue Thomas ◽  
Bastiaan R. Bloem ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Care Management ◽  
Information Provision ◽  
Care Utilization ◽  
Core Element ◽  
Personalized Care ◽  
Positive Effects ◽  
Management Models ◽  
Core Elements

There is a growing awareness that delivery of integrated and personalized care is necessary to meet the needs of persons living with Parkinson’s disease. In other chronic diseases than Parkinson’s disease, care management models have been deployed to deliver integrated and personalized care, yielding positive effects on patients’ health outcomes, quality of life and health care utilization. However, care management models have been highly heterogeneous, as there is currently no clear operationalization of its core elements. In addition, most care management models are disease-specific and not tailored to the individual needs and preferences of a patient. In this viewpoint we present an integrated and personalized care management model for persons with Parkinson’s disease costing of five core elements: (1) care coordination, (2) patient navigation, (3) information provision, (4) early detection of signs and symptoms through proactive monitoring and (5) process monitoring. Following the description of each core element, implications for implementing the model into practice are discussed. Finally, we provide clinical and methodological considerations on the evaluation of care management models.

scholarly journals P.015 Long-term progression and prognosis in different subtypes of Parkinson’s disease: validation of a new multi-domain subtyping method

2019 ◽  
Vol 46 (s1) ◽  
pp. S17
Author(s):  
S Fereshtehnejad ◽  
Y Zeighami ◽  
A Dagher ◽  
RB Postuma
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
De Novo ◽  
Early Stage ◽  
Real Life ◽  
Clinical Manifestations ◽  
Personalized Care ◽  
Autonomic Disturbance ◽  
Progression Markers

Background: Parkinson’s disease (PD) varies in clinical manifestations and course of progression from person to person. Identification of distinct PD subtypes is of great priority to develop personalized care approaches. We aimed to compare long-term progression and prognosis between different PD subtypes. Methods: Data on 421 individuals with de novo early-onset PD was retrieved from Parkinson’s Progression Markers Initiative (PPMI). Using a newly developed multi-domain subtyping method (based on motor phenotype, RBD, autonomic disturbance, early cognitive deficit), we divided PD population into three subtypes at baseline: “mild motor-predominant”, “Diffuse malignant” and “Intermediate”. Rate of global progression (mixed motor and non-motor features) and developing dementia were compared between the subtypes. Results: Patients with “diffuse malignant” PD experienced 0.5 z-score further worsening of global composite outcome (p=0.017) and 2.2 further decline in MOCA score (p=0.001) after 6-years of follow-up. Hazard for MCI/dementia was significantly higher in “diffuse malignant” (HR=3.2, p<0.001) and “intermediate” (HR=1.8, p<0.001) subtypes. Individuals with “diffuse malignant” PD had the lowest level of CSF amyloid-beta (p=0.006) and SPECT striatal binding ratio (p=0.001). Conclusions: This multi-domain subtyping is a valid method to predict subgroups of PD with distinct patterns of long-term progression at drug-naïve early-stage with potential application in real-life clinical practice.

scholarly journals Moving towards Integrated and Personalized Care in Parkinson’s Disease: A Framework Proposal for Training Parkinson Nurses

2021 ◽  
Vol 11 (7) ◽  
pp. 623
Author(s):  
Marlena van Munster ◽  
Johanne Stümpel ◽  
Franziska Thieken ◽  
David Pedrosa ◽  
Angelo Antonini ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Management Support ◽  
Care Needs ◽  
Conceptual Approach ◽  
Theoretical Concepts ◽  
Personalized Care ◽  
Care Models ◽  
Training Opportunities ◽  
Differentiated Care

Delivering healthcare to people living with Parkinson’s disease (PD) may be challenging in face of differentiated care needs during a PD journey and a growing complexity. In this regard, integrative care models may foster flexible solutions on patients’ care needs whereas Parkinson Nurses (PN) may be pivotal facilitators. However, at present hardly any training opportunities tailored to the care priorities of PD-patients are to be found for nurses. Following a conceptual approach, this article aims at setting a framework for training PN by reviewing existing literature on care priorities for PD. As a result, six prerequisites were formulated concerning a framework for training PN. The proposed training framework consist of three modules covering topics of PD: (i) comprehensive care, (ii) self-management support and (iii) health coaching. A fourth module on telemedicine may be added if applicable. The framework streamlines important theoretical concepts of professional PD management and may enable the development of novel, personalized care approaches.

scholarly journals How People with Parkinson's Disease and Health Care Professionals Wish to Partner in Care Using eHealth: Co-Design Study

10.2196/19195 ◽  
2020 ◽  
Vol 22 (9) ◽  
pp. e19195
Author(s):  
Carolina Wannheden ◽  
Åsa Revenäs
Keyword(s):  
Parkinson’S Disease ◽  
Health Care ◽  
Parkinson's Disease ◽  
Health Care Professionals ◽  
Care Management ◽  
Chronic Care ◽  
Self Care ◽  
Chronic Care Management ◽  
Organizational Constraints ◽  
Ehealth Service

Background Worldwide, the number of people with Parkinson’s disease (PD) is predicted to double between the years 2005 and 2030. Chronic care management requires active collaboration and knowledge exchange between patients and health care professionals (HCPs) for best possible health outcomes, which we describe as co-care. eHealth services have the potential to support the realization of co-care between people with PD (PwP) and HCPs. Objective This study aimed to explore how co-care could be operationalized in PD care, supported by eHealth. More specifically, this study explores PwP's and HCPs' expectations and desired eHealth functionalities to achieve co-care. Methods Principles of participatory design were used to enable the identification of co-care needs and design ideas, in a series of 4 half-day co-design workshops. The sample included 7 (4 women) PwP and 9 (4 women) HCPs, including 4 neurologists, 3 nurses, and 2 physiotherapists. The co-design process resulted in a functional prototype that was evaluated by the co-design participants in the last workshop. Data were collected through note cards produced by the participants during the first 3 workshops and focus group discussions during the 3rd and 4th workshops. The data were analyzed using qualitative thematic analysis. After the workshop series, the prototype was demonstrated at a Mini Fair for ongoing PD research and evaluated using a self-developed questionnaire with 37 respondents: 31 PwP (14 women) and 6 informal caregivers (3 women). Descriptive statistics are reported. Results The qualitative analysis of data resulted in 2 main themes. The first theme, core eHealth functionalities and their expected values, describes 6 desired eHealth functionalities for supporting PD co-care between PwP and HCPs: (1) self-tracking, (2) previsit forms, (3) graphical visualization, (4) clinical decision support, (5) self-care recommendations, and (6) asynchronous communication. The second theme, individual and organizational constraints, describes constraints that need to be addressed to succeed with an eHealth service for co-care. Individual constraints include eHealth literacy and acceptance; organizational constraints include teamwork and administrative workload. The majority of the questionnaire respondents (31/37, 84%) perceived that they would benefit from an eHealth service similar to the demonstrated prototype. All prototype functionalities were rated as very important or important by the majority of respondents (ranging from 86% to 97% per functionality). Conclusions This study adds to our knowledge on how PD co-care could be operationalized. Co-care implies a shift from episodic routine-driven care to more flexible care management that is driven by the mutual needs of patients and HCPs and supported by active information exchange between them, as well as automated information processing to generate patient-specific advice. More research is needed to further explore the concept of co-care in chronic care management and what it means for self-care and health care. International Registered Report Identifier (IRRID) RR2-10.2196/11278

scholarly journals How People with Parkinson's Disease and Health Care Professionals Wish to Partner in Care Using eHealth: Co-Design Study (Preprint)

2020 ◽  
Author(s):  
Carolina Wannheden ◽  
Åsa Revenäs
Keyword(s):  
Parkinson’S Disease ◽  
Health Care ◽  
Parkinson's Disease ◽  
Health Care Professionals ◽  
Care Management ◽  
Chronic Care ◽  
Self Care ◽  
Chronic Care Management ◽  
Organizational Constraints ◽  
Ehealth Service

BACKGROUND Worldwide, the number of people with Parkinson’s disease (PD) is predicted to double between the years 2005 and 2030. Chronic care management requires active collaboration and knowledge exchange between patients and health care professionals (HCPs) for best possible health outcomes, which we describe as co-care. eHealth services have the potential to support the realization of co-care between people with PD (PwP) and HCPs. OBJECTIVE This study aimed to explore how co-care could be operationalized in PD care, supported by eHealth. More specifically, this study explores PwP's and HCPs' expectations and desired eHealth functionalities to achieve co-care. METHODS Principles of participatory design were used to enable the identification of co-care needs and design ideas, in a series of 4 half-day co-design workshops. The sample included 7 (4 women) PwP and 9 (4 women) HCPs, including 4 neurologists, 3 nurses, and 2 physiotherapists. The co-design process resulted in a functional prototype that was evaluated by the co-design participants in the last workshop. Data were collected through note cards produced by the participants during the first 3 workshops and focus group discussions during the 3rd and 4th workshops. The data were analyzed using qualitative thematic analysis. After the workshop series, the prototype was demonstrated at a Mini Fair for ongoing PD research and evaluated using a self-developed questionnaire with 37 respondents: 31 PwP (14 women) and 6 informal caregivers (3 women). Descriptive statistics are reported. RESULTS The qualitative analysis of data resulted in 2 main themes. The first theme, core eHealth functionalities and their expected values, describes 6 desired eHealth functionalities for supporting PD co-care between PwP and HCPs: (1) self-tracking, (2) previsit forms, (3) graphical visualization, (4) clinical decision support, (5) self-care recommendations, and (6) asynchronous communication. The second theme, individual and organizational constraints, describes constraints that need to be addressed to succeed with an eHealth service for co-care. Individual constraints include eHealth literacy and acceptance; organizational constraints include teamwork and administrative workload. The majority of the questionnaire respondents (31/37, 84%) perceived that they would benefit from an eHealth service similar to the demonstrated prototype. All prototype functionalities were rated as very important or important by the majority of respondents (ranging from 86% to 97% per functionality). CONCLUSIONS This study adds to our knowledge on how PD co-care could be operationalized. Co-care implies a shift from episodic routine-driven care to more flexible care management that is driven by the mutual needs of patients and HCPs and supported by active information exchange between them, as well as automated information processing to generate patient-specific advice. More research is needed to further explore the concept of co-care in chronic care management and what it means for self-care and health care. INTERNATIONAL REGISTERED REPORT RR2-10.2196/11278

scholarly journals Body-Worn Sensors for Remote Monitoring of Parkinson’s Disease Motor Symptoms: Vision, State of the Art, and Challenges Ahead

2021 ◽  
pp. 1-13
Author(s):  
Silvia Del Din ◽  
Cameron Kirk ◽  
Alison J. Yarnall ◽  
Lynn Rochester ◽  
Jeffrey M. Hausdorff
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Remote Monitoring ◽  
State Of The Art ◽  
Digital Health ◽  
Clinical Care ◽  
Motor Symptoms ◽  
Personalized Care ◽  
Evaluation And Monitoring ◽  
The Impact

The increasing prevalence of neurodegenerative conditions such as Parkinson’s disease (PD) and related mobility issues places a serious burden on healthcare systems. The COVID-19 pandemic has reinforced the urgent need for better tools to manage chronic conditions remotely, as regular access to clinics may be problematic. Digital health technology in the form of remote monitoring with body-worn sensors offers significant opportunities for transforming research and revolutionizing the clinical management of PD. Significant efforts are being invested in the development and validation of digital outcomes to support diagnosis and track motor and mobility impairments “off-line”. Imagine being able to remotely assess your patient, understand how well they are functioning, evaluate the impact of any recent medication/intervention, and identify the need for urgent follow-up because things are changing? This could offer new pragmatic solutions for personalized care and clinical research. So the question remains: how close are we to achieving this? Here, we describe the state-of-the-art based on representative papers published between 2017 and 2020. We focus on remote (i.e., real-world, daily-living) monitoring of PD using body-worn sensors (e.g., accelerometers, inertial measurement units) for assessing motor symptoms and their complications. Despite the tremendous potential, existing challenges exist (e.g., validity, regulatory) that are preventing the widespread clinical adoption of body-worn sensors as a digital outcome. We propose a roadmap with clear recommendations for addressing these challenges and future directions to bring us closer to the implementation and widespread adoption of this important way of improving the clinical care, evaluation, and monitoring of PD.

scholarly journals Parkinson’s Disease: Personalized Pathway of Care for Device-Aided Therapies (DAT) and the Role of Continuous Objective Monitoring (COM) Using Wearable Sensors

2021 ◽  
Vol 11 (7) ◽  
pp. 680
Author(s):  
Vinod Metta ◽  
Lucia Batzu ◽  
Valentina Leta ◽  
Dhaval Trivedi ◽  
Aleksandra Powdleska ◽  
...  
Keyword(s):  
Parkinson’S Disease ◽  
Parkinson's Disease ◽  
Wearable Sensors ◽  
Motor Fluctuations ◽  
Advanced Stage ◽  
Personalized Care ◽  
Objective Monitoring ◽  
Pathway Of Care ◽  
Non Motor Symptoms

Parkinson’s disease (PD) is a chronic, progressive neurological disorder and the second most common neurodegenerative condition. Advanced PD is complicated by erratic gastric absorption, delayed gastric emptying in turn causing medication overload, and hence the emergence of motor and non-motor fluctuations and dyskinesia, which is initially predictable and then becomes unpredictable. As the patient progresses to the advanced stage, advanced Parkinson’s disease (APD) is characterized by refractory motor and non motor fluctuations, unpredictable OFF periods, and troublesome dyskinesias The management of APD is a complex affair. There is growing recognition that GI dysfunction is common in PD, with virtually the entire GI system (the upper and lower GI tracts) causing problems from dribbling to defecation. The management of PD should focus on personalized care addressing both motor and non-motor symptoms, ideally including not only dopamine replacement but also associated non-dopaminergic circuits, particularly focusing on noradrenergic, serotonergic, and cholinergic therapies bypassing the gastrointestinal tract (GIT) by infusion or device-aided therapies (DAT), including levodopa–carbidopa intestinal gel infusion, apomorphine subcutaneous infusion, and deep brain stimulation, which are available in many countries for the management of the advanced stage of Parkinson’s disease (APD). The PKG (KinetiGrap) can be used as a continuous objective monitoring (COM) aid, as a screening tool to help to identify advanced PD (APD) patients suitable for DAT, and can thus improve clinical outcomes.

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