Journal of Personalized Medicine

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13 pages, 3040 KiB

Open AccessArticle

An Individualized Multi-Modal Approach for Detection of Medication “Off” Episodes in Parkinson’s Disease via Wearable Sensors

by Emad Arasteh, Maryam S. Mirian, Wyatt D. Verchere, Pratibha Surathi, Devavrat Nene, Sepideh Allahdadian, Michelle Doo, Kye Won Park, Somdattaa Ray and Martin J. McKeown

J. Pers. Med. 2023, 13(2), 265; https://doi.org/10.3390/jpm13020265 - 31 Jan 2023

Cited by 2 | Viewed by 2626

Abstract

The primary treatment for Parkinson’s disease (PD) is supplementation of levodopa (L-dopa). With disease progression, people may experience motor and non-motor fluctuations, whereby the PD symptoms return before the next dose of medication. Paradoxically, in order to prevent wearing-off, one must take the [...] Read more.

The primary treatment for Parkinson’s disease (PD) is supplementation of levodopa (L-dopa). With disease progression, people may experience motor and non-motor fluctuations, whereby the PD symptoms return before the next dose of medication. Paradoxically, in order to prevent wearing-off, one must take the next dose while still feeling well, as the upcoming off episodes can be unpredictable. Waiting until feeling wearing-off and then taking the next dose of medication is a sub-optimal strategy, as the medication can take up to an hour to be absorbed. Ultimately, early detection of wearing-off before people are consciously aware would be ideal. Towards this goal, we examined whether or not a wearable sensor recording autonomic nervous system (ANS) activity could be used to predict wearing-off in people on L-dopa. We had PD subjects on L-dopa record a diary of their on/off status over 24 hours while wearing a wearable sensor (E4 wristband^®) that recorded ANS dynamics, including electrodermal activity (EDA), heart rate (HR), blood volume pulse (BVP), and skin temperature (TEMP). A joint empirical mode decomposition (EMD) / regression analysis was used to predict wearing-off (WO) time. When we used individually specific models assessed with cross-validation, we obtained > 90% correlation between the original OFF state logged by the patients and the reconstructed signal. However, a pooled model using the same combination of ASR measures across subjects was not statistically significant. This proof-of-principle study suggests that ANS dynamics can be used to assess the on/off phenomenon in people with PD taking L-dopa, but must be individually calibrated. More work is required to determine if individual wearing-off detection can take place before people become consciously aware of it. Full article

(This article belongs to the Special Issue Care Personalization in Parkinson Disease)

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11 pages, 1349 KiB

Open AccessArticle

Telemedicine as an Untapped Opportunity for Parkinson’s Nurses Training in Personalized Care Approaches

by Marlena van Munster, Johanne Stümpel, Timo Clemens, Katarzyna Czabanowska, David J. Pedrosa, Tiago A. Mestre and on behalf of the iCare-PD Consortium

J. Pers. Med. 2022, 12(7), 1057; https://doi.org/10.3390/jpm12071057 - 28 Jun 2022

Cited by 1 | Viewed by 2087

Abstract

(1) Background: Parkinson nurses (PN) take over important functions in the telemedical care of person’s with Parkinson’s disease (PwPs). This requires special competencies that have so far been largely unexplored. The aim of the article is to identify competencies of PN operating in [...] Read more.

(1) Background: Parkinson nurses (PN) take over important functions in the telemedical care of person’s with Parkinson’s disease (PwPs). This requires special competencies that have so far been largely unexplored. The aim of the article is to identify competencies of PN operating in a personalized care model. (2) Methods: This study employed a qualitative approach. Based on the competency framework for telenursing, PN were asked about their competencies using a qualitative online survey. (3) Results: The results show that PN need competencies on a personal and organizational level, as well as in the relationship with PwPs. PN have developed these skills through professional exchange, training, and personal experience. In addition, both hindering and beneficial factors for the development of competencies could be identified. (4) Conclusions: Competency development for telemedical care is complex and must be designed and promoted in a targeted manner. Full article

(This article belongs to the Special Issue Care Personalization in Parkinson Disease)

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10 pages, 242 KiB

Open AccessArticle

Ethical and Legal Aspects of Technology-Assisted Care in Neurodegenerative Disease

by Bjoern Schmitz-Luhn, Jennifer Chandler and on behalf of the iCARE-PD Consortium

J. Pers. Med. 2022, 12(6), 1011; https://doi.org/10.3390/jpm12061011 - 20 Jun 2022

Cited by 5 | Viewed by 2256

Abstract

Technological solutions are increasingly seen as a way to respond to the demands of managing complex chronic conditions, especially neurodegenerative diseases such as Parkinson’s Disease. All of these new possibilities provide a variety of chances to improve the lives of affected persons and [...] Read more.

Technological solutions are increasingly seen as a way to respond to the demands of managing complex chronic conditions, especially neurodegenerative diseases such as Parkinson’s Disease. All of these new possibilities provide a variety of chances to improve the lives of affected persons and their families, friends, and caregivers. However, there are also a number of challenges that should be considered in order to safeguard the interests of affected persons. In this article, we discuss the ethical and legal considerations associated with the use of technology-assisted care in the context of neurodegenerative conditions. Full article

(This article belongs to the Special Issue Care Personalization in Parkinson Disease)

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30 pages, 2449 KiB

Open AccessArticle

Co-Designing an Integrated Care Network with People Living with Parkinson’s Disease: A Heterogeneous Social Network of People, Resources and Technologies

by Amélie Gauthier-Beaupré, Emely Poitras, Sylvie Grosjean, Tiago A. Mestre and on behalf of the iCARE-PD Consortium

J. Pers. Med. 2022, 12(6), 1001; https://doi.org/10.3390/jpm12061001 - 19 Jun 2022

Cited by 3 | Viewed by 3314

Abstract

As part of the iCARE-PD project, a multinational and multidisciplinary research endeavour to address complex care in Parkinson’s disease, a Canadian case study focused on gaining a better understanding of people living with Parkinson’s disease (PwP) experiences with health and medical services, particularly [...] Read more.

As part of the iCARE-PD project, a multinational and multidisciplinary research endeavour to address complex care in Parkinson’s disease, a Canadian case study focused on gaining a better understanding of people living with Parkinson’s disease (PwP) experiences with health and medical services, particularly their vision for a sustainable, tailored and integrated care delivery network. The multifaceted nature of the condition means that PwP must continuously adapt and adjust to every aspect of their lives, and progressively rely on support from care partners (CP) and various health care professionals (HCP). To envision the integrated care delivery network from the perspective of PwP, the study consisted of designing scenarios for an integrated care delivery network with patients, their CP and their HCP, as well as identifying key requirements for designing an integrated care delivery network. The results demonstrate that numerous networks interact, representing specific inscriptions, actors and mediators who meet at specific crossing points. This resulted in the creation of a roadmap and toolkit that takes into consideration the unique challenges faced by PwP, and the necessity for an integrated care delivery network that can be personalized and malleable so as to adapt to evolving and changing needs over time. Full article

(This article belongs to the Special Issue Care Personalization in Parkinson Disease)

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12 pages, 3920 KiB

Open AccessArticle

Smartphone-Based Body Location-Independent Functional Mobility Analysis in Patients with Parkinson’s Disease: A Step towards Precise Medicine

by Diogo Vila-Viçosa, Mariana Leitão, Raquel Bouça-Machado, Filipa Pona-Ferreira, Sara Alberto, Joaquim J. Ferreira and Ricardo Matias

J. Pers. Med. 2022, 12(5), 826; https://doi.org/10.3390/jpm12050826 - 19 May 2022

Cited by 1 | Viewed by 2343

Abstract

Ecological evaluation of gait using mobile technologies provides crucial information regarding the evolution of symptoms in Parkinson’s disease (PD). However, the reliability and validity of such information may be influenced by the smartphone’s location on the body. This study analyzed how the smartphone [...] Read more.

Ecological evaluation of gait using mobile technologies provides crucial information regarding the evolution of symptoms in Parkinson’s disease (PD). However, the reliability and validity of such information may be influenced by the smartphone’s location on the body. This study analyzed how the smartphone location affects the assessment of PD patients’ gait in a free-living environment. Twenty PD patients (mean ± SD age, 64.3 ± 10.6 years; 9 women (45%) performed 3 trials of a 250 m outdoor walk using smartphones in 5 different body locations (pants pocket, belt, hand, shirt pocket, and a shoulder bag). A method to derive gait-related metrics from smartphone sensors is presented, and its reliability is evaluated between different trials as well as its concurrent validity against optoelectronic and smartphone criteria. Excellent relative reliability was found with all intraclass correlation coefficient values above or equal to 0.85. High absolute reliability was observed in 21 out of 30 comparisons. Bland-Altman analysis revealed a high level of agreement (LoA between 4.4 and 17.5%), supporting the use of the presented method. This study advances the use of mobile technology to accurately and reliably quantify gait-related metrics from PD patients in free-living walking regardless of the smartphone’s location on the body. Full article

(This article belongs to the Special Issue Care Personalization in Parkinson Disease)

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7 pages, 246 KiB

Open AccessCommunication

Measuring Quality of Life in Parkinson’s Disease—A Call to Rethink Conceptualizations and Assessments

by Maria Stührenberg, Carolin S. Berghäuser, Marlena van Munster, Anna J. Pedrosa Carrasco, David J. Pedrosa and on behalf of the iCARE-PD Consortium

J. Pers. Med. 2022, 12(5), 804; https://doi.org/10.3390/jpm12050804 - 16 May 2022

Cited by 5 | Viewed by 2374

Abstract

Parkinson’s disease (PD) is a chronic condition that considerably impacts the perception of quality of life (QoL) in both patients and their caregivers. Modern therapeutic approaches and social efforts strive at maintaining and promoting QoL. It has emerged as a fundamental parameter for [...] Read more.

Parkinson’s disease (PD) is a chronic condition that considerably impacts the perception of quality of life (QoL) in both patients and their caregivers. Modern therapeutic approaches and social efforts strive at maintaining and promoting QoL. It has emerged as a fundamental parameter for clinical follow-up and poses one of the most important endpoints in scientific and economic evaluations of new care models. It is therefore of utmost importance to grasp concepts of QoL in a meaningful way. However, when taking a look at the origin of our modern understanding of QoL and existing methods for its measurement in PD patients, some aspects seem to lack sufficient appreciation. This article elaborates on how the perception of health and QoL have changed over time and discuss whether current understandings of both are reflected in the most commonly applied assessment methods for people with PD. Full article

(This article belongs to the Special Issue Care Personalization in Parkinson Disease)

12 pages, 1178 KiB

Open AccessArticle

Home Health Nursing Care Time for Patients with Parkinson’s Disease

by Yumi Iwasa, Miyoko Suzuki and Izumi Saito

J. Pers. Med. 2022, 12(5), 714; https://doi.org/10.3390/jpm12050714 - 29 Apr 2022

Viewed by 2221

Abstract

There is an urgent need to provide personalized care more efficiently to patients with Parkinson’s disease (PD) who live at home. To understand the impact of patient attributes and features on nursing care time, we assessed the amount of time required to perform [...] Read more.

There is an urgent need to provide personalized care more efficiently to patients with Parkinson’s disease (PD) who live at home. To understand the impact of patient attributes and features on nursing care time, we assessed the amount of time required to perform home visits to patients with PD and identified patient characteristics related to differences in nursing care time. Twenty patient (median age 78.0 years) visits were video-recorded. Nursing care activities were categorized, while time spent on them was measured to identify differences in care time by patient. Correlations between patient characteristics and care times were calculated. The median time per visit was 49 min and 7 s. Time was mostly spent on daily living assistance (76.0%), followed by medical care assistance (10.0%) and record keeping and administration (14.0%). Results suggested that patient care was characterized by longer time spent on patient comfort, physical therapy, and patient consultation or education. In general, time per visit increased with patients’ age. The variation in care implementation time tended to be large in daily living assistance and small in medical care assistance. These data may be useful for providing and managing personalized care for patients. These data can also contribute to making nurse care more specialized. Full article

(This article belongs to the Special Issue Care Personalization in Parkinson Disease)

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7 pages, 379 KiB

Open AccessOpinion

The Category of Conventional Physiotherapy: The Case of Parkinson’s Disease Guidelines

by Martina Hoskovcová, Evžen Růžička, Ota Gál and on behalf of the iCARE-PD Consortium

J. Pers. Med. 2022, 12(5), 730; https://doi.org/10.3390/jpm12050730 - 30 Apr 2022

Cited by 2 | Viewed by 2578

Abstract

This opinion paper reviews the use of the category of “conventional physiotherapy” (CPT) in Parkinson’s disease (PD)-relevant reviews and meta-analyses and points out serious inconsistencies within and among them. These are first discussed in general, leading to the conclusion that, in most cases, [...] Read more.

This opinion paper reviews the use of the category of “conventional physiotherapy” (CPT) in Parkinson’s disease (PD)-relevant reviews and meta-analyses and points out serious inconsistencies within and among them. These are first discussed in general, leading to the conclusion that, in most cases, the category of CPT encompasses a range of incompatible interventions. This undermines previous conclusions about their superiority or inferiority relative to various other treatment modalities. Next, the update to the European Physiotherapy Guidelines is discussed in detail, since it treats CPT as a global and time-independent category per se, ascribing effects in various domains to it. This introduces several important biases into the findings presented in this publication. These are subsequently discussed, and it is concluded that the categorisation of various physiotherapy techniques under the umbrella term of CPT is empty, or even dangerous, and should be abandoned. Other categories are suggested as a replacement, including “Other Physiotherapy Techniques” and “Multimodal Training”. Full article

(This article belongs to the Special Issue Care Personalization in Parkinson Disease)

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