From a viewpoint of pediatric–adult transition medical care

Abstract

This report discusses a home–visit medical care given by a pediatric neurologist from a viewpoint of pediatric to adult transitional care, which is regarded to be rare. I had worked for 33 years as a pediatric neurologist for children with neuromuscular diseases in Aichi Prefectural Colony Central Hospital, and they have become older and diseases have progressed. After retiring from the hospital, I opened “Kuma home– medical care clinic”． Patients with intractable nervous diseases are our main targets ; including neuromuscular diseases. 68% of them suffer from muscular dystrophy being cared at home with an artificial respirator. Care is given at their home within the fixed time period with an appointment, and prescription and examination are outsourced. We have a doctor, a part–time manager, 2 nurses, and 2 counselors. We have regular and irregular patients, 50 in total. 23 of them live within the range and use the equipment we lend. Others are from far away and receive regular visits by a general practitioner or rent the equipment from other clinics. 28 of them use NPPV at night or all day, while 13 patients use TPPV. We pay attention to prevent worsening or sudden change of symptoms. Anticipated night or emergency calls are rare. For emergency cases, we recommend going to a nearby emergency hospital which we introduce them to in advance, and had their records registered with. This mechanism has worked out so far. However, the local general hospital is not fully ready for accepting such patients. Necessity to provide the home–visit medical care is heightened to improve the QOL of the patients with intractable nervous diseases. It is critical to form a support system based on the cooperation with the local general practitioners involved with home healthcare. To continuously provide a stable home medical care, securing and preparing the institutes/facilities where hospitalization therapy is available are essential. Furthermore, with the recent development of new treatments for example gene therapy, it can be said that medical methods that can participate in home medical care are becoming widespread.