2021 Volume 38 Issue 4 Pages 611-615
Japanese “Intractable Neurological Diseases” are dedined as 1) diseases with unknown pathogenic mechanism, 2) diseases with no established treatment, 3) rare diseases, and 4) diseases that require prolonged medical treatment. In Europe and the United States, there is no equivalent term for Japanese “Intractable Neurological Disease.” Although the activities of nurse specialists overseas are useful for the future efforts in Japan, there are various differences in culture, religion, and health care systems, in addition to the unique Japanese perspectives on 1), 2), and 4). The greatest unmet needs of patients with intractable neurological diseases are the development of desease–modifying therapies to suppress the progression of the disease. At the present time, it is necessary to learn from “patients living with the disease” on a daily basis and continue to be involved in medical care from the time of diagnosis to the advanced stage of the disease, with a basic stance of “patient-centered medicine”.
Although Parkinson's disease (PD) is classified as a movement disorder, the concept of the disease has changed dramatically with a wide variety of non–motor symptoms in most patients. The symptomatic treatment of PD is extensive and has become very complex, with frequent use of multiple anti–PD drugs other than oral medications (patches and subcutaneous injection) and device–aided therapy. Therefore, the multidisciplinary team of experts for PD patients is essential. The provision of optimal medical and nursing care requires a high level of expertise, and various challenges are required in the PD medical care.
The PD nurse specialists (PDNS) are expected to play a central role in the comprehensive multidisciplinary medical care team for patients and caregivers with specialized knowledge of all aspects of PD treatment. The importance of PDNS has been described in the clinical guidelines produced by the National Institute for Health and Care Excellence (NICE) in the UK (2006, 2017).
