臺灣實施全民健保後重型乙型海洋性貧血疾病型態之改變

Changing Profiles of β-Thalassemia Major in Taiwan after the Implementation of National Health Insurance

罹患重型乙型海洋性貧血對於病人、家庭及社會等皆為沉重的重擔，因此如何減少重型乙型海洋性貧血胎兒的出生極為重要。為瞭解台灣地區推動重型乙型海洋性貧血防制成果，並瞭解現行存活病患之情況，本研究於1997年11月間針對18家有能力診斷重型乙型海洋性貧血病患之區域級以上教學醫院，與2個海洋性貧血病患及家屬組成之協會，進行結構式問卷調查。結果發現：（1）病患平均年齡為10.8±6.0歲，其中年齡最大者為34歲，而超過15歲以上病患佔24%；（2）客家籍人士居住較密集地區如桃園、新竹、苗栗等三地盛行率明顯較高為10萬分2.8，其它地區則為10萬分之1.2 ；（3）出生年代介於1983-1995年之平均年發生率為10萬分之5.0，全民健康保險開辦後（1996-1997年）之平均年發生率降為10萬分之1.4；（4）病患平均年齡由8.1±4.9歲增為10.8±6.0歲，但遠低於美國的16.2±9.2歲。本研究顯示台灣罹患重型乙型海洋性貧血病患於全民健保實施後明顯減少，而對於重型乙型海洋性貧血病患的照顧雖有進步，但仍有努力的空間。

Abstract: Thalassemia major is a big burden of patient and his family. The purpose of the study was to describe the profiles of patients with thalassemia major in Taiwan, and to understand the possible impact by the implementation of National Health Insurance program. A structuralized questionnaire was sent to 18 regional teaching hospitals/medical centers and 2 thalassemia-related non-government organizations. The results revealed that (1) 24% of the patients with thalassemia major was older than 15 years, the oldest patient was 34 years old and the mean age of the patients was 10.8±6.0 years; (2) a higher prevalence rate in Hakka people aeras than the others in Taiwan was noted; (3) the average incidence rate fell dramatically from 5.0/100,000 to 1.4/100,000 per year after the implementation of national health insurance program;(4)the mean age of patients was 10.8±6.0 years in 1997, and it was larger than the mean age(8.1±4.9 years)in 1989. Our study demonstrated that the implementation of national health insurance program may play an important role in the decrease of both prevalence and incidence rates of thalassemia major in Taiwan.