Abstract
Quality of life in adult patients with hemophilia and influencing factors
  
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EN KeyWords: haemophilia  quality of life  joint health
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作者单位
刘颖 中国医学科学院北京协和医院物理医学康复科北京 100730 
赵宏 中国医学科学院北京协和医院物理医学康复科北京 100730 
陈丽霞 中国医学科学院北京协和医院物理医学康复科北京 100730 
杜晓娟 中国医学科学院北京协和医院物理医学康复科北京 100730 
张建平 中国医学科学院北京协和医院物理医学康复科北京 100730 
华宝来 中国医学科学院北京协和医院血液科北京 100730 
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EN Abstract:
  Objective: To investigate the quality of life (QOL) in adult patients with haemophilia and the influencing factors. Methods: Seventy-two male adult patients with haemophilia were recruited. Their quality of life (QOL), activities of daily living (ADL) and joint health status were assessed respectively using the short form-36 health survey (SF-36), the functional independence score in haemophilia (FISH) and the haemophilia joint health score (HJHS). Results: The average SF-36 score in all patients was 422.04±143.19. The score of role limitations due to physical health (RP) which was 20.21±12.96, was the lowest. There was a positive correlation between the total SF-36 score and the PF score with the FISH score and the level of education (P<0.05). There was a negative correlation between the total SF-36 score with the number of joint hemorrhage, the scores of total HJHS, muscle strength around joints, joint pain, crepitus and range of motion (ROM) (P<0.05). There was also a negative correlation between the PF score with the patients' age, the number of joint hemorrhage and muscle hemorrhage, the scores of total HJHS, muscle strength around joints, gait, joint pain, crepitus and ROM (P<0.05), with a high Pearson correlation coefficient in HJHS and muscle strength. Conclusions: The QOL was low in adult patients with haemophilia. The number of affected joints, joint health status, ADL and the degree of education were closely related to the QOL and the PF. Reducing joint hemorrhage, improving joint health status, in particular, strengthening muscles, improving the ability of ADL and the degree of education may be helpful to improve patients' QOL.
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