RESUMO
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.
Assuntos
Doença de Parkinson/psicologia , Doença de Parkinson/terapia , Sistemas de Apoio Psicossocial , Qualidade de Vida/psicologia , Autocuidado/psicologia , Humanos , Assistência Centrada no Paciente/métodos , Autocuidado/métodosRESUMO
Chronic neurological diseases are the leading cause of disability globally. Yet, our health-care systems are not designed to meet the needs of many patients with chronic neurological conditions. 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 because of a scarcity 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 often not involved in clinical decision making. By use of Parkinson's disease as a model condition, we show an integrated care concept with a patient-centred perspective that includes evidence-based solutions to improve health-care delivery for people with chronic neurological conditions. We anticipate that this integrated care model will improve the quality of life for patients, create a positive working environment for health-care professionals, and be affordable.