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What is the role of prophylaxis in the improvement of health-related quality of life of patients with hemophilia?

机译:预防在改善血友病患者健康相关生活质量中的作用是什么?

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摘要

A 32-year-old male with severe hemophilia presents for his annual evaluation. He has a history of multiple joint bleeds that he has always treated on-demand, that is, after they occur. You have recommended prophylaxis, that is, preventively, before they occur, to decrease his episodes of bleeding; however, he had been reluctant to comply in the past. He is having difficulty keeping up at work because of interruptions, pain, and lost time at work. He is willing to consider a trial of prophylaxis. You discuss the impact of hemophilia on his health-related quality of life (HRQOL) and consider measuring his HRQOL over time using a generic measure of HRQOL to determine whether prophylaxis will reduce interruptions, pain, and lost time from work and improve his HRQOL.
机译:一名患有严重血友病的32岁男性需要进行年度评估。他有多次关节出血的病史,他一直按需治疗,即发生后。您建议您进行预防,即在发生之前进行预防,以减少他的出血次数;但是,他过去不愿意遵守。由于中断,痛苦和工作时间的浪费,他很难继续工作。他愿意考虑进行预防性试验。您讨论了血友病对其健康相关的生活质量(HRQOL)的影响,并考虑使用通用的HRQOL量度来衡量他的HRQOL随时间的变化,以确定预防措施是否可以减少中断,疼痛和下班时间并改善HRQOL。

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