RESUMO
Objective To analyze the impact of comprehensive care on living conditions of hemophiliac patients in China.Methods Based on the managerial experience of the World Federation of Hemophilia(WFH) and China's national condition,we carried out comprehensive care on patients with hemophilia (PWH) in our center.Questionnaire surveys on living condition were conducted before and after intervention (in 2004 and 2016,respectively) to Beijing's permanent hemophiliacs.The results of questionnaires conducted in 2004 were settled as baseline data,and a comparative analysis was done between the baseline data and the results of surveys conducted in 2016 in the PWH who had received comprehensive care for at least 2 years.Results Totally 109 cases received baseline survey whereas 136 cases received questionnaires after intervention.Thirty-nine(28.7％) and 70(51.5％) patients conducted prophy-laxis or home treatment after receiving comprehensive care,respectively.There was significant difference (P＜0.01)in terms of treatment timeliness.Similar results were found (P＜0.01)in terms of times of bleeding per year,and there was significant improvement (P＜0.01) on joint disorder after comprehensive care.Conclusion After receiving comprehensive care,PWH are more willing to accept and conduct prophylaxis and home treatment.The bleeding can be controlled more effectively,and the treatment can be given more timely.Meanwhile,PWH can receive more improvements in joint and walking function.
RESUMO
Objective To analyze the impact of comprehensive care on living conditions of hemophiliac patients in China.Methods Based on the managerial experience of the World Federation of Hemophilia(WFH) and China's national condition,we carried out comprehensive care on patients with hemophilia (PWH) in our center.Questionnaire surveys on living condition were conducted before and after intervention (in 2004 and 2016,respectively) to Beijing's permanent hemophiliacs.The results of questionnaires conducted in 2004 were settled as baseline data,and a comparative analysis was done between the baseline data and the results of surveys conducted in 2016 in the PWH who had received comprehensive care for at least 2 years.Results Totally 109 cases received baseline survey whereas 136 cases received questionnaires after intervention.Thirty-nine(28.7％) and 70(51.5％) patients conducted prophy-laxis or home treatment after receiving comprehensive care,respectively.There was significant difference (P＜0.01)in terms of treatment timeliness.Similar results were found (P＜0.01)in terms of times of bleeding per year,and there was significant improvement (P＜0.01) on joint disorder after comprehensive care.Conclusion After receiving comprehensive care,PWH are more willing to accept and conduct prophylaxis and home treatment.The bleeding can be controlled more effectively,and the treatment can be given more timely.Meanwhile,PWH can receive more improvements in joint and walking function.