RESUMO
OBJECTIVE: This study was performed to assess changes over a 5-year period in the number of patients with intractable diseases living in Kyoto city who received public financial aid for treatment. Variation in the quality of their lives was also investigated. METHODS: Questionnaires were mailed to all patients with intractable diseases who lived in Kyoto city and who applied for financial aid for treatment in 1996 and in 2001. RESULTS: 1. The total number of patients increased 1.4-fold over the 5 years (from 4,097 to 5,891). 2. The number of patients who required medical treatments increased. Especially a considerable number of patients required treatments for secondary conditions ascribable to a long-term bed-confined state or prolonged treatment for primary diseases. 3. The number of patients who required care to support daily life or hospital visits increased 2-fold. 4. It was demonstrated that 52.8% of patients felt their lives had improved after the introduction of long-term care insurance system. CONCLUSIONS: The number of patients with intractable diseases appears to be increasing and their clinical courses are becoming chronic and more severe. This situation can be expected to persist in the near future, so that further consideration of measures to provide medical care and welfare is necessary.
