Hosseini Sayed Mohammad Reza, Mousavi Sayed Hamid, Mesbah-Namin Seyed Alireza, Tabibian Shadi, Dorgalaleh Akbar
Medical Research Center, Kateb University, Kabul, Afghanistan.
Afghanistan National Charity Organization for Special Diseases (ANCOSD), Kabul, Afghanistan.
Haemophilia. 2023 May;29(3):770-775. doi: 10.1111/hae.14772. Epub 2023 Mar 3.
Haemophilia is the most common severe congenital bleeding disorder and can significantly influence patients' quality of life. The health-related quality of life (HRQoL) is a multi-dimensional concept that assess effect of different aspects of health status, including physical, mental, and social domains. Identification of the factors affecting the HRQoL of Persons with Haemophilia (PWH) can guide health care system to better management of patients.
The aim of the present study is to evaluate HRQoL in PWH in Afghanistan.
This cross-sectional study was conducted on 100 PWH in Kabul City, Afghanistan. Data were collected using 36-Item-Short-Form Health Survey (SF-36) questionnaire and analysed using correlation coefficients and regression analysis.
The mean scores for the SF-36 questionnaire 8 domains range from 33 ± 38.3 to 58.15 ± 20.5. The highest mean value belongs to physical function (PF) (58.15), whereas the lowest is related to restriction of activities due to emotional problems (RE) (33.00). A significant association (p < .005) was observed between all domains of SF-36 and patients' age except for PF (p = .055) and general health (GH) (p = .75). A significant association was also observed between all HRQoL domains and the severity of haemophilia (p < .001). The severity of haemophilia was the significant predictor for Physical Component Summary (PCS) and Mental Component Summary (MCS) (p < .001).
Due to the reduced HRQoL in Afghan PWH, special attention by health care system should be paid to improve patients' quality of life.
血友病是最常见的严重先天性出血性疾病，会显著影响患者的生活质量。健康相关生活质量（HRQoL）是一个多维度概念，用于评估健康状况不同方面的影响，包括身体、心理和社会领域。识别影响血友病患者（PWH）HRQoL的因素可指导医疗保健系统更好地管理患者。
本研究的目的是评估阿富汗PWH的HRQoL。
本横断面研究在阿富汗喀布尔市的100名PWH中进行。使用36项简短健康调查问卷（SF-36）收集数据，并使用相关系数和回归分析进行分析。
SF-36问卷8个领域的平均得分范围为33±38.3至58.15±20.5。最高平均值属于身体功能（PF）（58.15），而最低值与因情绪问题导致的活动受限（RE）（33.00）有关。除PF（p = 0.055）和一般健康（GH）（p = 0.75）外，SF-36的所有领域与患者年龄之间均观察到显著关联（p < 0.005）。在所有HRQoL领域与血友病严重程度之间也观察到显著关联（p < 0.001）。血友病严重程度是身体成分总结（PCS）和心理成分总结（MCS）的显著预测因素（p < 0.001）。
由于阿富汗PWH的HRQoL降低，医疗保健系统应特别关注改善患者的生活质量。
