[Investigation on daily life concerning patients with spinocerebellar degeneration]

Patients with spinocerebellar degeneration show gradual progression of symptoms and decreasing ADL (activities of daily living), resulting in their having many problems concerning daily care. However, there are relatively few patients with such diseases who have participated in those education and consultation services provided by the public health center. To better meet the needs of these patients, we investigated their attitudes and the various parameters affecting their actual daily life. A survey of patients in Sakai-city was conducted via a questionnaire mailed to 100 patients who applied for financial aid for spinocerebellar degeneration in 1996. A total of 74% of the patients responded to the questionnaire. Patients over 50 years old accounted for 77% of the total, Among all responding patients, 14% had their own occupation. The average period of morbidity was 4.8 years. Most (62%) patients were being treated as outpatients. Main symptoms of the patients were associated with speech and trunk movement. About one-fourth of the patients required constant assistance for bathing and transportation. The main person providing care for the patients was the spouse. Main demands for health and welfare services were, "consulting on care and daily life", and "the opportunity for patients to talk with each other." The need for health services is high because such patients have several symptoms. Information acquired through this investigation from patients and their families will be useful for providing better care for patients, with spinocerebellar degeneration.