ACCESS TO CARE AND HEALTH OUTCOMES AMONG THE SEVERE HEMOPHILIA A POPULATION IN CHINA TODAY

Author(s)

Zhang M1, Epstein JD2, Li-McLeod J2, Xiong Y21Baxter Asia Pacific, Shanghai, China, 2Baxter Bioscience, Westlake Village, CA, USA

OBJECTIVES: Hemophilia care in China is at a nascent stage and efforts to improve care require a better understanding of current treatment standards, clinical outcomes, and patient health-related quality of life (HRQOL) in China relative to other countries. METHODS: Severe hemophilia A patients and their caregivers in China (Beijing and Shanghai), Russia, Argentina, and the US completed a cross-sectional survey of treatment and health outcomes in 2009. HRQOL was measured using the PEDS-QL for children, the SF-12 for adults and the EQ-5D for all patients. [Due to recruitment methods, the Chinese patient cohort may not be representative of the average Chinese hemophilia patient.] RESULTS:   A total of 160, 167, 57, and 117 patients in China, Russia, Argentina and the US completed the survey, respectively.  On average, while Russian, Argentine, and American patients reported being diagnosed within the first year after birth, Chinese patients waited 6 years.  Only 18% of the Chinese patients are able to receive FVIII to treat bleeds all of the time, while it is 53%, 86% and 91% for Argentina, Russia and US (Chi-square p<0.0001). Chinese hemophilia children scored an average of 38.4 on the physical functioning domain of the PEDS-QL; significantly lower than Argentina (61.5), Russia (60.6) and the US (82.9) (all p<0.0001).  Chinese hemophilia adults reported an average of 33.9 on the SF-12 physical component summary which was significantly lower than patients in Argentina (39.3), Russia (37.4) and the US (39.8) (all p<0.01). The average EQ-5D health utility score was significantly lower in China (0.49) compared with 0.75, 0.73 and 0.80 in Argentina, Russia and the US, respectively (all p<0.0001). CONCLUSIONS: There is substantial room to improve the HRQOL for Chinese hemophilia patients. Improving access to hemophilia care and Factor VIII treatment may improve health outcomes and thus HRQOL.  

Conference/Value in Health Info

2010-09, ISPOR Asia Pacific 2010, Phuket, Thailand

Value in Health, Vol. 13, No. 7 (November 2010)

Code

PSY8

Topic

Patient-Centered Research

Topic Subcategory

Patient-reported Outcomes & Quality of Life Outcomes

Disease

Systemic Disorders/Conditions

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