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  • 1
    Online Resource
    Online Resource
    The Role of Parkinson Nurses for Personalizing Care in Parkinson’s Disease: A Systematic Review and Meta-Analysis
    IOS Press ; 2022
    In:  Journal of Parkinson's Disease Vol. 12, No. 6 ( 2022-09-02), p. 1807-1831
    Details
    In: Journal of Parkinson's Disease, IOS Press, Vol. 12, No. 6 ( 2022-09-02), p. 1807-1831
    Abstract: Background: Quality of life (QoL) of persons with Parkinson’s disease (PD) is diminished by (non-)motor symptoms, that require personalized care. Parkinson Nurses (PN) may be pivotal promoting tailored care offerings. This systematic review and meta-analysis investigates PD care models and aims at furnishing current concepts of PN to offer personalized care. Objective: The purpose of this study is to identify the various roles and functions that PN may hold for personalized PD care. Methods: We performed a systematic literature review, utilizing: PubMed, Web of Science, The Cochrane Library, and PsycINFO. The review qualitatively evaluated articles, which described personalized care models involving PNs and was guided by the personalized care management model. A meta-analysis compared patient-reported QoL (quantified using the 39-item Parkinson’s Disease Questionnaire) between personalized care interventions involving PN versus standard care with. Results: Twenty-seven publications were identified, including six randomized, controlled trials ascertaining with health related QoL (n = 1830 PwPs). The qualitative evaluation revealed that PN contribute to all aspects of personalized care. The meta-analysis showed no improved QoL in personalized care models compared to standard care, thought a great heterogeneity among study design and interventions was outlined (Standardized Mean Difference = –0.8935; 95% Confidence Interval, –2.1177 to 0.3307; z = –1.43, p = 0.1526). Conclusion: PN fulfil important functions in personalized PD care. For the future, a clear role definition will be necessary to adjust training for PN across healthcare systems and care settings but especially to realize their full potential for PD care.
    Type of Medium: Online Resource
    ISSN: 1877-7171 , 1877-718X
    URL: Article
    DOI: 10.3233/JPD-223215
    Language: Unknown
    Publisher: IOS Press
    Publication Date: 2022
    detail.hit.zdb_id: 2599550-9
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  • 2
    Online Resource
    Online Resource
    Measuring Quality of Life in Parkinson’s Disease—A Call to Rethink Conceptualizations and Assessments
    MDPI AG ; 2022
    In:  Journal of Personalized Medicine Vol. 12, No. 5 ( 2022-05-16), p. 804-
    Details
    In: Journal of Personalized Medicine, MDPI AG, Vol. 12, No. 5 ( 2022-05-16), p. 804-
    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 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.
    Type of Medium: Online Resource
    ISSN: 2075-4426
    URL: Article
    DOI: 10.3390/jpm12050804
    Language: English
    Publisher: MDPI AG
    Publication Date: 2022
    detail.hit.zdb_id: 2662248-8
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  • 3
    Online Resource
    Online Resource
    Co-Designing an Integrated Care Network with People Living with Parkinson’s Disease: A Heterogeneous Social Network of People, Resources and Technologies
    MDPI AG ; 2022
    In:  Journal of Personalized Medicine Vol. 12, No. 6 ( 2022-06-19), p. 1001-
    Details
    In: Journal of Personalized Medicine, MDPI AG, Vol. 12, No. 6 ( 2022-06-19), p. 1001-
    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 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.
    Type of Medium: Online Resource
    ISSN: 2075-4426
    URL: Article
    DOI: 10.3390/jpm12061001
    Language: English
    Publisher: MDPI AG
    Publication Date: 2022
    detail.hit.zdb_id: 2662248-8
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  • 4
    Online Resource
    Online Resource
    Ethical and Legal Aspects of Technology-Assisted Care in Neurodegenerative Disease
    MDPI AG ; 2022
    In:  Journal of Personalized Medicine Vol. 12, No. 6 ( 2022-06-20), p. 1011-
    Details
    In: Journal of Personalized Medicine, MDPI AG, Vol. 12, No. 6 ( 2022-06-20), p. 1011-
    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 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.
    Type of Medium: Online Resource
    ISSN: 2075-4426
    URL: Article
    DOI: 10.3390/jpm12061011
    Language: English
    Publisher: MDPI AG
    Publication Date: 2022
    detail.hit.zdb_id: 2662248-8
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  • 5
    Online Resource
    Online Resource
    Co-Designing Digital Technologies for Improving Clinical Care in People with Parkinson’s Disease: What Did We Learn?
    MDPI AG ; 2023
    In:  Sensors Vol. 23, No. 10 ( 2023-05-22), p. 4957-
    Details
    In: Sensors, MDPI AG, Vol. 23, No. 10 ( 2023-05-22), p. 4957-
    Abstract: The healthcare model is shifting towards integrated care approaches. This new model requires patients to be more closely involved. The iCARE-PD project aims to address this need by developing a technology-enabled, home-based, and community-centered integrated care paradigm. A central part of this project is the codesign process of the model of care, exemplified by the active participation of patients in the design and iterative evaluation of three sensor-based technological solutions. We proposed a codesign methodology used for testing the usability and acceptability of these digital technologies and present initial results for one of them, MooVeo. Our results show the usefulness of this approach in testing the usability and acceptability as well as the opportunity to incorporate patients’ feedback into the development. This initiative will hopefully help other groups incorporate a similar codesign approach and develop tools that are well adapted to patients’ and care teams’ needs.
    Type of Medium: Online Resource
    ISSN: 1424-8220
    URL: Article
    DOI: 10.3390/s23104957
    Language: English
    Publisher: MDPI AG
    Publication Date: 2023
    detail.hit.zdb_id: 2052857-7
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  • 6
    Online Resource
    Online Resource
    The Category of Conventional Physiotherapy: The Case of Parkinson’s Disease Guidelines
    MDPI AG ; 2022
    In:  Journal of Personalized Medicine Vol. 12, No. 5 ( 2022-04-30), p. 730-
    Details
    In: Journal of Personalized Medicine, MDPI AG, Vol. 12, No. 5 ( 2022-04-30), p. 730-
    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, 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”.
    Type of Medium: Online Resource
    ISSN: 2075-4426
    URL: Article
    DOI: 10.3390/jpm12050730
    Language: English
    Publisher: MDPI AG
    Publication Date: 2022
    detail.hit.zdb_id: 2662248-8
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  • 7
    Online Resource
    Online Resource
    Personalized Care in Late-Stage Parkinson’s Disease: Challenges and Opportunities
    MDPI AG ; 2022
    In:  Journal of Personalized Medicine Vol. 12, No. 5 ( 2022-05-18), p. 813-
    Details
    In: Journal of Personalized Medicine, MDPI AG, Vol. 12, No. 5 ( 2022-05-18), p. 813-
    Abstract: Late-stage Parkinson’s disease (LSPD) patients are highly dependent on activities of daily living and require significant medical needs. In LSPD, there is a significant caregiver burden and greater health economic impact compared to earlier PD stages. The clinical presentation in LSPD is dominated by motor and non-motor symptoms (NMS) that most of the time have a sub-optimal to no response to dopaminergic treatment, especially when dementia is present. Non-pharmacological interventions, including physiotherapy, cognitive stimulation, speech, occupational therapy, and a specialized PD nurse, assume a key role in LSPD to mitigate the impact of disease milestones or prevent acute clinical worsening and optimize the management of troublesome NMS. However, the feasibility of these approaches is limited by patients’ cognitive impairment and the difficulty in delivering care at home. The present care challenge for LSPD is the ability to offer a person-centered, home-delivered palliative care model based on Advanced Care Planning. An ongoing European multicentric project, PD_Pal, aims to address this challenge.
    Type of Medium: Online Resource
    ISSN: 2075-4426
    URL: Article
    DOI: 10.3390/jpm12050813
    Language: English
    Publisher: MDPI AG
    Publication Date: 2022
    detail.hit.zdb_id: 2662248-8
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  • 8
    Online Resource
    Online Resource
    Canadian Healthcare Access in Parkinson’s Disease and COVID-19: A Cross-Sectional Survey
    Cambridge University Press (CUP) ; 2023
    In:  Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques
    Details
    In: Canadian Journal of Neurological Sciences / Journal Canadien des Sciences Neurologiques, Cambridge University Press (CUP)
    Abstract: Accès aux soins de santé au Canada dans le cas de la maladie de Parkinson et pendant la pandémie de COVID-19 : une étude transversale. Contexte : La maladie de Parkinson (MP) est une affection neurodégénérative chronique courante. À la suite de la pandémie de COVID-19, la prestation de soins de santé a été confrontée à de grands défis dans le monde entier. Nous avons ainsi cherché à explorer de quelle façon la pandémie de COVID-19 a modifié, en matière de soins de santé, l’expérience des personnes vivant au Canada avec la MP. Méthodes : Nous avons mené une étude nationale transversale en ligne portant en 2020 sur l’accès aux soins de santé des personnes atteintes de la MP. Les participants ( n = 298) ont été recrutés par Parkinson Canada, l’association nationale de patients et ses partenaires provinciaux, qui ont annoncé l’étude dans un bulletin mensuel de liaison. Nous avons utilisé des statistiques descriptives et des modèles de régression multivariés pour tester des associations pertinentes. Une valeur p 〈 0,05 a été considérée comme statistiquement significative. Résultats : Au cours de la pandémie de COVID-19, les patients atteints de la MP ont déclaré avoir plus de difficultés à obtenir des soins de santé liés à leur affection et être moins satisfaits de la prestation de soins de santé par rapport à leur expérience prépandémique. L’insatisfaction à l’égard des soins de santé était liée à la présence d’obstacles rendant difficile l’accès aux services, à un manque de confiance dans l’accès aux soins à distance, à une insatisfaction à l’égard des soins avant la pandémie et à la difficulté d’obtenir des soins pendant la pandémie de COVID-19. Les besoins non satisfaits en matière de soins de santé ont été associés à un manque de confiance dans l’accès aux soins à distance, à une insatisfaction à l’égard des soins prépandémiques, à la difficulté d’obtenir des soins prépandémiques et à des problèmes de communication. Conclusion : Nos résultats suggèrent en somme que l’expérience en matière de soins de santé pour les personnes vivant avec la MP a changé de manière notable pendant la pandémie de COVID-19, des difficultés d’accès aux soins virtuels se manifestant. De plus, une mauvaise expérience en matière de soins de santé avant la pandémie a été amplifiée pendant celle-ci.
    Type of Medium: Online Resource
    ISSN: 0317-1671 , 2057-0155
    URL: Article
    DOI: 10.1017/cjn.2023.275
    RVK:
    XA 10000
    Language: English
    Publisher: Cambridge University Press (CUP)
    Publication Date: 2023
    detail.hit.zdb_id: 2577275-2
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  • 9
    Online Resource
    Online Resource
    Coping Styles in Patients with Parkinson’s Disease: Consideration in the Co-Designing of Integrated Care Concepts
    MDPI AG ; 2022
    In:  Journal of Personalized Medicine Vol. 12, No. 6 ( 2022-06-01), p. 921-
    Details
    In: Journal of Personalized Medicine, MDPI AG, Vol. 12, No. 6 ( 2022-06-01), p. 921-
    Abstract: Integrated care models may help in designing care for Parkinson’s disease (PD) that is more efficient and patient-centered. However, in order to implement such models successfully, it is important to design these models around patients’ needs and preferences. Personality traits and coping styles play a well-studied important role in patients’ disease perception and their utilization of medical and social services to cope with their disease. There is evidence that coping styles remain largely unchanged over the course of PD; coping styles are defined in the early stages of life and extend over the entire lifespan of the patient. Therefore, it seems necessary to consider aspects of the personality traits and coping styles of PD patients in the development and implementation of care models. We postulate that by taking patients’ personality traits and coping styles into account, care models for PD can be designed in a more individualized and, thus, more effective way. This paper, structured in three main sections, attempts to structure the uptake of patients’ coping styles in the co-design of integrated care models. However, further studies are needed to better develop tailored care concepts to the needs of people living with PD and their individual coping styles.
    Type of Medium: Online Resource
    ISSN: 2075-4426
    URL: Article
    DOI: 10.3390/jpm12060921
    Language: English
    Publisher: MDPI AG
    Publication Date: 2022
    detail.hit.zdb_id: 2662248-8
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  • 10
    Online Resource
    Online Resource
    Telemedicine as an Untapped Opportunity for Parkinson’s Nurses Training in Personalized Care Approaches
    MDPI AG ; 2022
    In:  Journal of Personalized Medicine Vol. 12, No. 7 ( 2022-06-28), p. 1057-
    Details
    In: Journal of Personalized Medicine, MDPI AG, Vol. 12, No. 7 ( 2022-06-28), p. 1057-
    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 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.
    Type of Medium: Online Resource
    ISSN: 2075-4426
    URL: Article
    DOI: 10.3390/jpm12071057
    Language: English
    Publisher: MDPI AG
    Publication Date: 2022
    detail.hit.zdb_id: 2662248-8
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