title: Burden of illness: direct and indirect costs among persons with hemophilia A in the United States.
abstract: OBJECTIVE
  To examine the direct and indirect costs of hemophilia care among persons with hemophilia A in the US.
  
  
  METHODS
  Observational data were obtained from HUGS-Va, a multi-center study from six federally supported hemophilia treatment centers (HTCs). Eligible individuals completed a standardized initial questionnaire and were followed regularly for 2 years to obtain information on work or school absenteeism, time spent arranging hemophilia care, and unpaid hemophilia-related support from caregivers. Data from 1-year healthcare utilization records and 2-year clotting factor dispensing records measured direct medical costs. Indirect costs were imputed using the human capital approach, which uses wages as a proxy measure of work time output.
  
  
  RESULTS
  A total of 222 patients with complete data were included in the analysis. Two-thirds had severe hemophilia and the mean age was 21.1 years. The use of prophylaxis in severe hemophilia patients is associated with statistically significant reduction in the numbers of emergency department (ED) visits and bleeding episodes compared with those who were treated episodically. From the societal perspective, mild hemophilia costs $59,101 (median: $7519) annually per person, $84,363 (median: $61,837) for moderate hemophilia, $201,471 (median: $143,431) for severe hemophilia using episodic treatment, and $301,392 (median: $286,198) for severe hemophilia receiving prophylaxis. Clotting factor contributed from 54% of total costs in mild hemophilia to a maximum of 94% for patients with severe hemophilia receiving prophylaxis.
  
  
  CONCLUSIONS
  Hemophilia is a costly disorder not only because of its high medical expenses, but also due to the high indirect costs incurred.
authors: University of Southern California , CA , USA.
authors: Zheng-Yi
authors: ZY
authors: Zhou
authors: Marion A
authors: MA
authors: Koerper
authors: Kathleen A
authors: KA
authors: Johnson
authors: Brenda
authors: B
authors: Riske
authors: Judith R
authors: JR
authors: Baker
authors: Megan
authors: M
authors: Ullman
authors: Randall G
authors: RG
authors: Curtis
authors: Jiat-Ling
authors: JL
authors: Poon
authors: Mimi
authors: M
authors: Lou
authors: Michael B
authors: MB
authors: Nichol
mesh_terms: D000041:Absenteeism; D000293:Adolescent; D000328:Adult; D017028:Caregivers / Q000191:economics; D002648:Child; D017281:Cost of Illness; D019937:Diagnostic Techniques and Procedures / Q000191:economics; D005169:Factor VIII / Q000191:economics / Q000627:therapeutic use; D005260:Female; D005102:Health Expenditures / Q000706:statistics & numerical data*; D006296:Health Services / Q000191:economics / Q000706:statistics & numerical data; D006467:Hemophilia A / Q000188:drug therapy / Q000191:economics*; D006470:Hemorrhage / Q000191:economics; D006801:Humans; D008297:Male; D017059:Models, Econometric; D012720:Severity of Illness Index; D018582:Sick Leave; D012959:Socioeconomic Factors; D014481:United States / Q000453:epidemiology; D055815:Young Adult
chemical_list: D005169:Factor VIII
keywords: Burden of illness; Economic; Hemophilia A; Indirect cost