Variety and Variability in the diagnosis of Parkinson's disease. A Look from the Relational Cybernetics (original) (raw)
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"Bicycle" Model for Interdisciplinary approach in Parkinson's Disease
Parkinson's disease is a multifaceted and symptomatically complex neurodegenerative condition, considered the second most prevalent neuroaging disease, compromising quality of life as the disease progresses. To improve the quality of life, some evidence points to a health model based on interdisciplinarity, however its real benefits are still limited in the literature, compared to the traditional monotherapeutic approach. The objective of this study was to develop a review containing a dynamic, comprehensive methodology, with a modern vision to address the main points of interest that are represented in the research model called "bicycle model". Based on this method involving the interdisciplinary approach on the determinants of health status in Parkinson's disease. The results present strategies to collect data from questions about morbidity, quality of life, health determinants (disease) and disease characteristics. The final considerations presented show that different perspectives result in a broad scope for the interdisciplinary approach, by different professionals within their expertise, with improvement in the quality of life of this research population.
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Movement Disorders, 2010
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Sociology of Health & Illness, 2008
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The Lancet Neurology, 2020
Chronic neurological diseases are the leading source of disability globally. Yet, our healthcare systems are not designed optimally to meet the needs of the many chronic neurological patients. Care is fragmented, with poor interdisciplinary collaboration and lack of timely access to services and therapies. Furthermore, care is typically reactive, and complex problems are managed inadequately due to lack of disease-specific expertise and insufficient use of non-pharmacological interventions. Treatment plans tend to focus on the disease rather than the individual living with it, and patients are insufficiently involved in clinical decision making. Utilising Parkinson's disease as a model condition, we illustrate an integrated care concept with a patient-centred perspective that includes evidence-based solutions to tackle the limitations of current healthcare delivery for people with chronic neurological conditions. We anticipate that this integrated care model will improve the quality of lives of patients and create an attractive working environment for professionals, whilst being affordable for future generations. [151 words] Search strategy and selection criteria We searched for publications on healthcare and neurological conditions (in particular Parkinson's disease) published in MEDLINE from 1 January 1990 to 28 January 2020, using comprehensive electronic search strategies combining MeSH and free text search terms "chronic", "care", "network", "patientcenteredness", "integrated", "multidisciplinary", "interdisciplinary", "technology", "health services", "wearable sensors", "telemedicine", "Parkinson disease" and "Parkinson's disease", without language restrictions. Selected articles were also obtained from the reference lists of papers identified by the PubMed search and from searches of the authors' own files. We included both original studies and viewpoints.
Qualidade de vida em disfagia na doença de Parkinson: uma revisão sistemática
Revista CEFAC, 2013
A doença de Parkinson pode causar distúrbios da deglutição em qualquer fase da doença devido às disfunções dos movimentos. Apesar da diversidade de sintomas, normalmente as alterações iniciais na deglutição do parkinsoniano são despercebidas e podem ocasionar prejuízo na qualidade de vida. Contudo, instrumentos que avaliam a qualidade de vida em disfagia na doença de Parkinson não têm sido sistematicamente estudados. Esta revisão sistemática objetivou identificar a utilização do questionário de Qualidade de Vida em Disfagia para avaliação na doença de Parkinson. Foram incluídos artigos com sujeitos de ambos os sexos e com doença de Parkinson idiopática, e excluídos os artigos de avaliação de tratamento e que apresentaram indivíduos com outra forma de parkinsonismo. Após a busca realizada nos portais da Bireme, Pubmed e Banco de Teses da Capes, foram analisados 30 artigos, dos quais dois foram incluídos depois da aplicação da Escala de Jadad modificada. Os dois artigos evidenciaram q...
Participatory Design in Parkinson's Research with Focus on the Symptomatic Domains to be Measured
Journal of Parkinson's disease, 2015
Background: there is a growing interest in the objective assessment of health related outcomes using technology providing quality measurements to be applied not only in daily clinical practice, but also in scientific research. Differences in the understandings of the condition and the terminology used between people with Parkinson's (PwPs), clinicians and technical developers may influence the progress of a participatory design process. Objective: This paper reports on a participatory design process to achieve a consensus among PwPs, clinicians and technologists over the selection of a set of symptomatic domains to be continuously assessed, in order to provide results relevant to both PwPs and clinicians. Methods: The methods used were a Web based user survey, end-user focus groups, ranking by combined methods, a Delphi process performed among clinicians and scientists, and prioritization of the results in a concertation workshop for PwPs, clinicians and technologists. Results: ...
Time intervals in diagnosing Parkinson's disease: The patients' views
Patient education and counseling, 2015
To explore patients' views on their pathway to the diagnosis of Parkinson's disease (PD). A qualitative study of 52 essays written by patients with PD, using comparative content analysis. Patients divide their diagnostic pathway into three time intervals: recognition of the symptoms; the decision to seek help; and the process of diagnosing PD. Patients have difficulties recognizing the prodromal symptoms of PD (their knowledge is based on public figures with advanced PD) and mention their general practitioners do as well. The decision to seek help is influenced by the patient's attitude toward health care and by their significant others. More than half of the patients believe their diagnosis was delayed. However, the majority of all patients are satisfied with their diagnostic trajectory. The pathway to diagnosing PD is an iterative process influenced by patient-, health care provider- and disease-related factors. Despite possible delay in diagnosis, patients are content...