| Summary: | 碩士 === 國防醫學院 === 公共衛生學研究所 === 107 === Background:
Hemophilia, a rare inherited bleeding disorder in which one of the coagulation factors is deficient, slows the blood clotting process. The prevalence of hemophilia is estimated at 1/10000; its types can be categorized into deficiencies of factor VIII (hemophilia A), factor IX (hemophilia B), factor XI (hemophilia C) and other clotting factors, as well as other rare, unclear causes that result in inherited blood clotting factor deficiency. In recent years, the survival rate of hemophiliacs has been improved because of clotting factor replacement therapy; however, affected by various comorbidities caused by hemorrhages, these patients seek frequent medical treatment, thus increasing medical costs.
Methods:
Data for “inpatient expenditures by admissions (DD)” and “registry for contracted medical facilities (HOSB)”, retrieved from the National Health Insurance Research Database (NHIRD) for 1997-2013, were analyzed in this study. We identified the cases of hemophilia by using the ICD-9-CM codes (286.0; 286.1; 286.2; and 286.3) to investigate epidemiology, medical resource utilization, and risk factors associated with hospital mortality, with regards to hemophiliacs in Taiwan.
Results:
There were 1971 hospitalized hemophiliacs (5165 inpatient cases) between 1997-2013 in Taiwan (type A: 59.9%, type B: 9.9%, type C: 3.2%, other inherited blood clotting factor deficiencies: 27.0%). Among these cases, 76.5% were male and the average age was 38 years old (under 20 years of age: 28.0%, 20-39 years of age: 27.5%; 40-64, 26.6%; over 65, 17.9%). The percentage of hemophiliacs living in low-income households (3.8%) and the Charlson comorbidity index (CCI: 0.83) were quite low. Most inpatients received medical treatment in medical centers (69.7%), were hospitalized in a Pediatrics division (22.9%), and received surgical operations (62.3%). Many dwelt in northern Taiwan (46.4%) and in highly-urbanized areas (46.0%), and went to the hospital in the autumn (32.1%). The average Length of Stay (LOS) was 10 days (median: 6 days) and the average hospitalization cost per patient was NT$559,322 (median: NT$116,259). Overall, there were 91 deaths among these inpatient cases (rate: 4.6%).
The factors associated with medical resource utilization were age, low-income household status, hospital level, hospital division, whether there was surgery or not, living area, urbanization level, and hemophilia type. In addition, factors associated with hospital mortality were age, CCI, hemophilia type, hospital level and whether there was surgery or not.
Conclusion:
Compared to occidental countries, the hospital mortality of hemophiliacs in Taiwan are relatively high. The outcomes show that there is still room for improvement for Taiwan hemophiliacs in terms of healthcare policies and medication compliance. Furthermore, a nation-wide database for hemophilia registry should be established in order to effectively manage patients’ medical resource utilization, and to develop more flexible guidelines for hemophilia treatment and healthcare costs.
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