[The actual conditions of patients with intractable diseases in Hiroshima Prefecture]

All 3,515 patients of intractable diseases who received medical benefits in Hiroshima prefecture were surveyed to determine actual conditions of daily life while being treated. This is the first study in Japan, which has looked at daily life of all patients of intractable diseases at the level of a whole prefecture. Effective collection rate of the questionnaire was 78.8% (2,768 cases). The results are summarized as follows: 1) Many patients and their families wish to be treated at home, with the more severely impaired patients expressing a greater need for home care. 2) Large regional differences were seen in required travel time to visit the hospital, and in the percentage of patients and their families who expressed a desire for medical specialists in intractable diseases for their region. 3) While income of families of the severely impaired patient was generally low, their medical payment burden was heavy. In addition families of patients were heavily burdened physically and mentally. The tasks that lie ahead in the care of patients of intractable diseases would be home care assistance, correction of regional differences, and financial aid for severely impaired patients.