Our follow-up study survey data

Our follow-up study survey data GSK126 allow us to summarize the additional factors in the following paragraphs. We anticipate that with the rapid economic growth, government medical insurance currently available in many cities will eventually be available to patients

in the presently disadvantaged area, so that the knowledge on what obstacles to overcome is timely to help popularize prophylaxis to improve quality of life and function of more haemophilia children. First, people from different regions of China had different outcome expectation influenced by their local economic and health care development. Families from less developed areas hold lower expectation and their goal was to have acute or life-threatening bleeding managed with little understanding of the importance of preventative measures such as prophylaxis to prevent complication from recurrent bleedings. The 12 cities where the ‘Non-compliant Group’ patients resided are less developed with per capital GDP (2007) were less than US$3000, being as low as $945 (Guizhou). This is in contrast with the relatively higher economic levels

in Beijing, Guangzhou and Shandong where the ‘Compliant Group’ patients resided and where the per capita GDP were at US$7849, $4006 and $3921 respectively. Parents and patients in these economically more disadvantaged areas therefore need more basic knowledge on not only the ‘how’ to carry out haemophilia prophylaxis but also the potential benefits on the child’s well-being Pexidartinib and quality of life. To accomplish this, haemophilia healthcare workers need to disseminate the concept (by education to patients/parents/other healthcare workers) that haemophilia care is more than just providing treatments to stop bleeding. Prevention of complications from bleeding (as well as from inappropriate treatment) to improve quality of life should be the key. Second, haemophilia management requires expertise in comprehensive care teams. At the beginning,

we believed that high medical level was important to the compliance to prophylaxis. All 15 centers are first class and have paediatric expertise. However, 12 of them were non-compliance which indicates MCE that high qualification in medicin (not specific in haemophilia) is not enough for haemophilia prophylaxis or comprhensive care. The 3 centers with all patients successfully completing the trial are the centers that have been three of the six founding members of the Hemophilia Treatment Center Collaborative Network of China (HTCCNC; [4]). The HTCCNC members have been collaborating with each other and with centers outside of China on haemophilia care, and on developing comprehensive care teams over a number of years. Their team members already had an experience with patient education, clinical assessment, factor administration and data collection.

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