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.
Telephone number: +31-0243615202 Word count for abstract: 200. Word count for text: 7143 words. Number of references: 139. Number of figures: 2. Number of tables: 2.
AbstractIntroduction: Parkinson's disease (PD) is a chronic multisystem disorder that causes a wide variety of motor and non-motor symptoms. Over time, the progressive nature of the disease increases the risk of complications such as falls and loss of independence, having a profound impact on quality of life. The complexity and heterogeneity of symptoms therefore warrant a holistic, multidisciplinary approach. Specific healthcare professionals, e.g. the movement disorders neurologist and the PD nurse specialist, are considered essential members of this multidisciplinary team. However, with our increasing knowledge about different aspects of the disease, other disciplines are also being recognized as important contributors to the healthcare team. Areas covered: We describe a selection of these relatively newly-recognized disciplines, including the specialist in vascular medicine, gastroenterologist, pulmonologist, neuroophthalmologist, urologist, geriatrician/elderly care physician, palliative care specialist and the dentist. Furthermore, we share the view of a person with PD on how patients and caregivers should be involved in the multidisciplinary team. Finally, we have included a perspective on the new role of the movement disorder neurologist, with care delivery via "tele-neurology". Expert commentary: Increased awareness about the potential role of these 'new' professionals will further improve disease management and quality of life of PD patients.
Introduction: Qualitative research on patient experiences in early-stage Parkinson's disease (PD) is limited. It is increasingly acknowledged that clinical outcome assessments used in trials do not fully capture the range of symptoms/ impacts that are meaningful to people with early-stage PD. We aimed to conceptualize the patient experience in early-stage PD and identify, from the patient perspective, those cardinal symptoms/impacts which might be more useful to measure in clinical trials. Methods: In a mixed-methods analysis, 50 people with early-stage PD and nine relatives were interviewed. Study design and results interpretation were led by a multidisciplinary
Parkinson’s disease is an incurable, progressive neurodegenerative disease. This condition is complicated by the varying symptoms in individuals who differ in age of onset, symptoms, progression of disease, response to treatment and prognosis. In this paper, we focus on quality of life achieved through a combination of comprehensive health care, continuous support, and self care. Determining what people with Parkinson’s disease want is like assembling multiple puzzles simultaneously. While we surmise that patient centered care, support programs, access to comprehensive health care, and relevant symptom control are pieces of this puzzle, more longitudinal studies— which are observational in nature and correlate the impact of symptoms with patients’ reported needs— are necessary.
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