[Characteristics of home care patients with intractable neurological diseases (Nanbyo) in Tokyo].

The purpose of this study was to identify the characteristics of home care of patients with intractable neurological diseases. A survey was conducted of members of Tokyo Medical Association who were home visit doctors. They responded to questions about their patients who have suffered from either Parkinson's disease (PD), spinocerebellar degeneration (SCD), or amyotrophic lateral sclerosis (ALS), and whose home care have been supported by the care system for at least three months. Of 205 survey questionnaires collected, 198 were effective to be analyzed. The sample consisted of 105 patients with PD (53.0%), 63 patients with SCD (31.8%), and 30 patients with ALS (15.2%). The mean age of the PD was 75.5 years with a range of 53 to 90, SCD was 66.5 years with a range of 39 to 88, and ALS was 58.7 years with a range of 42 to 86. The major findings in this study were as follows: 1) The patients who had one or more medical equipment installed at the beginning of home care were 30% of ALS, 9% of PD and 18% of SCD. As time elapsed, patients who needed to have some medical equipment installed increased in ALS greater than in PD and SCD. 2) The home doctors predicted that the condition of 37% of ALS patients, 9% of PD, and 8% of SCD would probably be deteriorating within one month. 3) Of the 30 patients with ALS, 47% experienced hospitalization three times or more compared to 27% of PD and 21% of SCD. The most prevalent reason for hospitalization for ALS was respite of caregivers, PD and SCD, however, were hospitalized for control of prescription, a change for the worse, or treatment of other diseases. 4) Ninety percent of ALS caregivers felt extremely tired or slightly tired. Their home doctors responded that 83% of ALS caregivers did their best in caregiving. 5) ALS patients utilized social resources such as volunteers, care workers, services of supply and maintenance of medical equipment, and emergency care for 24 hours more than SCD and PD. In the conclusion, ALS patients experienced the highest hospitalization of the three diseases and respite of family caregivers was necessary. They showed a higher utilization of various social resources than other diseases. It is important to consider these characteristics of home care patients by diseases in order to prepare and develop the necessary support system of home care for the intractable neurological patients.