| 摘要: | 本研究之主要目的在於瞭解重型海洋性貧血病患因疾病而導致之醫療花費及生產力的耗損，並進一步探討重型海洋性貧血病患的人口學特質、疾病成本（包括直接成本與間接成本）之間的相關性。屬描述性、相關性之研究，以罹患重型海洋性貧血病患為母群體，分兩部分取得資料，一為全民健保2003年學術研究資料庫，取得318位病患之醫療費用資料；另一以結構式問卷進行問卷面訪，內容包括社會人口學基本資料、重型海洋性貧血成本調查等二部份，採立意取樣方式，樣本來自台北市及高雄市各一所醫學中心海洋性貧血門診之122名重型海洋性貧血病患為主要研究對象。
研究結果發現，疾病成本與門診次數、住院天數、直接成本與間接成本呈顯著正相關。樣本住院天數越多者，醫療資源使用越多，因此直接成本越高；門診次數及住院天數皆與間接病成本呈顯著正相關，而直接成本與間接成本也呈正相關，因看診或住院次數越多，直接成本增高，病患與陪病者之生產力損失也越高，因此間接成本也增高。
平均每位病患於2003年之疾病成本總共為2,170,235.95元，其中直接成本為257,663.63元，間接成本為1,912,572.32元，直接成本：間接成本＝11.87%：88.13%，病患的間接成本較直接成本高出很多。而在間接成本中，以早逝損失金額1,736,090.69元為最高，佔疾病成本之80.00%。2003年318位重型海洋性貧血病患之總疾病成本，經過加權調整後為116,103,239.34元。
Thalassemia is a hereditary blood disease. If husband and wife has the same abnormal gene, they will have a normal child in 25% , a child with abnormal gene in 50%, a child with Thalassemia Major in 25%.
The main purpose of this research is to realize the cost of illness on Thalassemia Major, and consumption of production due to Thalassemia Major. There are two data resources in This research. In the first part, this research using ‘National Health Insurance Research Database in 2003’ to estimate medical costs with 318 patients who have Thalassemia Major. And convenience samples of 122 Thalassemia Major patients were extracted from two large teaching hospitals in Taipei and Kaoshiung. The data was collected through interviews. Through the face-to-face interviews.
The result is the cost of illness in 2003 of each patient is NT$2,170,235.95 on average. The direct cost is NT$257,663.63, and the indirect cost is NT$1,912,572.32. The direct cost : the indirect cost =11.87%：88.13%. The indirect costs is the highest. In the indirect cost, the mortality costs is NT$1,736,090.69 higher than the morbidity costs (80.00% of the cost of illness). In 2003, the total costs of illness on 318 patients who have Thalassemia Major is NT$ 116,103,239.34. |
