BACKGROUND:Hemophilia is a rare inherited disorder associated with abnormal repeated bleeding and debilitating joint pain due to deficiency in coagulating factors VIII and IX. This study aimed to provide an updated account on the health-related quality of life (HRQoL) in children with hemophilia in Afghanistan. METHODS:This cross-sectional study included 65 randomly selected hemophiliacs out of 350 children registered with the Afghanistan Hemophilia Patient Association (AHPA). The patients were 8-16 years old and voluntarily entered the study. Data were collected through a demographic questionnaire and a Persian version of Haemo-QoL Questionnaire (short version) for children aged 8-16 years. RESULTS:The patients' age averaged 12.9 ± 3.9 years with a mean QoL score of 75.9 ± 17.4. The patients were suffering from hemophilia A, mostly the severe type (80%). They were born to low income families (95 %) with high illiteracy rates (>50%) and hemophilia family history (90%). Spearman test showed a significant correlation between age and QoL scores (r = 0.8, P = 0.02). One-way ANOVA indicated no significant difference between QoL scores of patients categorized based on hemophilia severity (P = 0.2, F = 1.3), family incomes (P = 0.9, F = 0.01) and parents' levels of education (P = 0.2-0.4, F = 0.82-1.3). The Cronbach alpha for the instrument was 0.82. CONCLUSION:Regardless of hemophilia severity, Family and Sports were the most impaired domains of QoL. Herein, we have presented the first reliable and updated data on hemophiliacs' demographic characteristics and their quality of life in Kabul.

译文

背景:血友病是一种罕见的遗传性疾病,与凝血因子VIII和IX缺乏引起的反复异常出血和使关节疼痛衰弱有关。这项研究旨在提供有关阿富汗血友病儿童健康相关生活质量(HRQoL)的最新资料。
方法:这项横断面研究包括从阿富汗血友病患者协会(AHPA)注册的350名儿童中随机选择的65名血友病患者。患者年龄为8-16岁,自愿参加研究。通过人口统计学问卷和波斯语版本的Haemo-QoL问卷(简短版本)收集了8-16岁儿童的数据。
结果:患者平均年龄为12.9±3.9岁,平均QoL得分为75.9±17.4。患者患有甲型血友病,多数为严重型(80%)。他们出生于低文盲率(> 50%)和血友病家族史(90%)的低收入家庭(95%)。 Spearman检验显示年龄与QoL得分之间存在显着相关性(r = 0.8,P = 0.02)。单向方差分析表明,根据血友病严重程度(P = 0.2,F = 1.3),家庭收入(P = 0.9,F = 0.01)和父母的受教育程度(P = 0.2- 0.4,F = 0.82-1.3)。仪器的Cronbach alpha为0.82。
结论:无论血友病严重程度如何,家庭和体育活动都是QoL受损最严重的领域。在此,我们介绍了有关血友病患者的人口统计学特征及其在喀布尔的生活质量的第一批可靠且更新的数据。

+1
+2
100研值 100研值 ¥99课程
检索文献一次
下载文献一次

去下载>

成功解锁2个技能,为你点赞

《SCI写作十大必备语法》
解决你的SCI语法难题!

技能熟练度+1

视频课《玩转文献检索》
让你成为检索达人!

恭喜完成新手挑战

手机微信扫一扫,添加好友领取

免费领《Endnote文献管理工具+教程》

微信扫码, 免费领取

手机登录

获取验证码
登录